The MSA Coalition is THE place to learn about MSA, connect with fellow patients, caregivers, and support groups, find invaluable information and resources, keep up-to-date with research and clinical trials, and attend yearly conferences that focus on patient questions, needs, and support. I'm so grateful for it. The Coalition has a 24-hour helpline staffed by compassionate listeners, a knowledgeable, hard-working, and responsive board of directors, and frequent, fabulous webinars and other videos that are always helpful. My sisters and I have found the Coalition to be an invaluable source of clear and accurate information and support as we care for our mom who has been living with MSA for the last ten years. Whether you and your family are new to MSA or have been struggling with it for some time, the MSA Coalition will have what you are looking for.
As a researcher dedicated to developing biomarkers for Multiple System Atrophy (MSA), I have witnessed firsthand the invaluable contributions of Mission MSA to the MSA community. This organization is remarkable for its unwavering support of patients, families, and researchers battling this challenging neurodegenerative disorder. Mission MSA provides essential resources and support groups that significantly enhance the quality of life for patients and their families. Their advocacy and awareness campaigns effectively highlight MSA, fostering a better understanding of the disease and improving patient outcomes. For researchers, Mission MSA facilitates collaboration, the exchange of ideas, and offers funding opportunities, accelerating the progress of biomarker development and clinical trials. By uniting patients, caregivers, healthcare professionals, and researchers, Mission MSA builds a strong, supportive community dedicated to combating MSA.
Mission MSA does an amazing job of spreading awareness and education about Multiple System Atrophy, a rare and terminal neurological condition. It provides support to and brings together patients and their caregivers from across the country and around the world. The staff and board are passionate and dedicated to advancing these goals and work everyday to help the MSA community. Mission MSA strives to advance MSA research to ultimately find a cure.
Mission MSA is a remarkable charity dedicated to advancing research, support, and awareness for Multiple System Atrophy (MSA), a rare neurodegenerative disorder. Through the unwavering commitment of its volunteers and the passion of its staff, Mission MSA has achieved significant milestones, profoundly impacting the MSA community.
The organization has established Centers of Excellence, ensuring that patients receive the highest quality multi-disciplinary clinical care and support. These centers are strategically located to be easily accessible to those affected by MSA, providing comprehensive and specialized care tailored to their needs.
Mission MSA also prioritizes education and training, offering extensive resources for patients, caregivers, and medical professionals. Their educational programs, including webinars and conferences, provide invaluable knowledge and support, helping individuals navigate the complexities of living with MSA. For example, their webinars cover a range of topics from genomic advances in MSA research to coping strategies for patients and caregivers.
Research is at the core of Mission MSA's mission. The organization has funded numerous clinical studies aimed at alleviating symptoms, slowing disease progression, and ultimately finding a cure. Their research grant program encourages early-career investigators to focus on MSA, fostering a new generation of scientists dedicated to this cause. Recently, they launched a groundbreaking multi-year project exploring the genetics of MSA, which has the potential to uncover critical insights and therapeutic targets.
Fundraising efforts by Mission MSA are both innovative and inclusive, such as the "Path to a Cure" 5K events, which bring together the community to raise awareness and funds for MSA research. These events, both virtual and in-person, exemplify the organization's commitment to creating a strong, supportive community.
Mission MSA’s tireless advocacy has also led to significant strides in public awareness and policy. Their advocacy committee works diligently to amplify the voices of those affected by MSA, striving for better support and recognition of the disease at national and global levels.
The achievements of Mission MSA are a testament to the selfless altruism of its volunteers and the dedication of its staff. By fostering a sense of community, advancing research, and providing unwavering support, Mission MSA continues to inspire hope and make a profound difference in the lives of those affected by Multiple System Atrophy.
I don’t think I could have survived as well as I did carrying and loving for my husband while he went through MSA, Without the support of vision, MSA and its support groups. The information empowered me to be the best I could be for my husband and the support group encouraged me to be the best I could be. As a result when I look back on that time, I see it as some of the most blessed time we had in our 36 1/2 years marriage, I will always be grateful for Mission MSA ❤️ Thank you!!! My husband donated his brain upon his death to the Mayo Clinic in Rochester, Minnesota for research and the biopsy showed he did have MSA!!!
Mission MSA has been a great nonprofit for my family and I. My father was diagnosed a few years ago and Mission MSA has helped us with resources, information, webinars and more. We are extremely grateful for everything they do.
Mission MSA's work makes a real impact on research and patient lives
As both, a researcher whose work has been directly supported by Mission MSA, and a Travel Award recipient from Mission MSA to attend the - Society for Neuroscience (SfN) annual meeting, I can attest to their exceptional work. Mission MSA has been instrumental in funding cutting-edge biomarker research, like the work in our lab. Also, their travel awards make it possible for scientists to share vital findings at conferences, accelerating progress.
Beyond research support, Mission MSA is a lifeline for patients and families facing this devastating disease. The team is compassionate, driven, and constantly working to improve care and support for those with MSA while simultaneously pushing for a cure. Their conferences are also informative and empowering attracting hundreds of researchers from around the world.
Mission MSA fully deserves recognition as a top non-profit. Their impact is tangible, and they give hope to the MSA community.
Great initiative! Really appreciate Pam's leadership and the work she has done to get this organization where it is today.
Mission MSA (formerly MSA Coalition)y do extremely valuable work to support a rare but extremely debilitating neurodegenerative disease. They do a great job with patient outreach but also support researchers in labs who are studying the disease and are trying to find therapies. My interactions with mission MSA have been mainly on the research side and they have been nothing but the best in all of my interactions.
Dealing with a rare autonomic and neurodegenerative condition is not easy. Mission MSA (as they are now called) has many resources available and they have facilitated me being able to reach out to others (through MSA Connect) with MSA and not feel so alone.
VIVO LOS FINES DE SEMANA CON UNA MUJER MARAVILLOSA AFECTADA DE AMS TIPO CEREBELOSA. HACE DOS SEMANAS LA SALVE DE MORIR Y ESTAMOS PENDIENTES DE ACCEDER A UN ESTUDIO CLINICO EN FASE 3. PARA MI ESTA ASOCIACION ES VITAL. YA QUE ME AYUDA A HUIR DEL CATASTROFISMO REINANTE EN EL ENTORNO DE MI PAREJA DANDONOS INFORMACION CIENTIFICA OBJETIVA. LO QUE NOS AYUDA A TRAZAR UN CAMINO Y COMBATIR SU DEPRESION CLINICA DERIVADA DE LA ENFERMEDAD
tengo AMS y estoy perdida, no conozco la organizocion y me gustaria contactarme con alguien que padesca la enfermedad quiero saber donde estan y todo lo referente a la fundacion.-
LINA INES BASOALTO DNI 5789677
The MSA Coalition is an amazing organization doing excellent work for those suffering from Multiple System Atrophy and their families. As an advocacy and support organization, The MSA Coalition advocates on behalf of MSA patients and looks for ways to find a cure for this terrible disease. The support arm of The MSA Coalition provides patients and their support networks with countless tools to better understand this relatively rare disease and affords those who are battling MSA with resources and networks to help wade through the world of MSA together. A truly remarkable organization doing important work!
The MSA Coalition couldn't be more helpful! From the day we learned about my fathers diagnosis until now they have always helped answer questions, find resources and assist with personal fundraising efforts. I look forward to working with them for years to come and even become more involved.
Provides exceptional resources for patients and caregivers with MSA
Strong track-record of supporting research initiatives to find a cure for MSA
Incredible group of people stiving for a cure with compassion for all of those suffering with Multiple System Atrophy. The goals of this group are the highest level of service possible!
My name is Deborah. I am 75 years old. I was self diagnosed with Parkinson’s Disease inthe fall of 2020. My mother had the disease . The Neurologist I saw concurrred & confirmed with MRI. After a course of Sinomet, levodopa ,carbidopa & Botox in the back of the neck to stop head tremors, I was sicker than ever & had lost 25 lbs. I was given a Dat Scan read as Parkinson’s and referred to NYU Langone where they read the scan as MSA and received a diagnosis of MSA -C. All meds were stopped and the Botox which paralyzed my chin to my chest wore off in 4 months. I gained the weight back & discovered the MSA Coalition. The Coalition keeps me up to date on the disease .So importantly it allows me to know I am not alone in this fight. We are a community working together to live with this disease & to find an answer.
I was diagnosed with MSA 6-7 years ago. I was still very active. As I have slowly worsened I have found the MSA Coalition to be a great source of knowledge. It has helped me personally and given me an opportunity to help others with this progressive disease. Many (?most) doctors are not familiar with it so reading and researching on the informative Coalition webpage.allows me and my wife toe be our own advocates . The MSA Coalition is an important part of my. care.
A fantastic non-profit that is phenomenally resourceful! A great platform including education and support for those dealing with this terrible disease, in addition to their loved ones.
They have been an important part of my life since 2004.
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I've been helped by the MSA Coalition for over 15 years from the time my wife, Liz. was finally diagnosed with MSA and her eventual passing. I've watched the organization grow and the research increase with their help. A wonderful nonprofit and family of people.
I was diagnosed with MSA in 2022 and found the MSA Coalition shortly after. like many, I had no experience with MSA and knew nothing about it. The Coalition has been an incredible resource for me as I go through this process. They are focused on improving the lives of people that suffer from MSA and they do an incredible job! They are the resource for people with MSA to connect with others who have MSA or are care takers/loved ones as well as people interested in MSA related research.
I am so thankful for the MSA Coalition and their team, and all they do to help people like me!
The Multiple System Atrophy Coalition is one of the most amazing organizations I have encountered. They support members and their families in many ways and provide a wonderful sense of community. Everyone that is involved is so kind and helpful. My mom having MSA was one of the most difficult things I've experienced in my life and the MSA Coalition was there to help. I loved attending the conferences, learning more about MSA, and connecting with others. With their fundraising, they are able to provide services and conferences for members at no additional cost which is extremely helpful when a family is dealing with such a debilitating disease. I talk about the MSA Coalition with many people and rave about what an amazing organization it is.
Our family has benefited from the MSA Coalition and its forerunner, the Shy-Drager Support Group, for nearly 20 years. When my brother was diagnosed with MSA in 2004, after several years of worsening symptoms, multiple system atrophy that even most physicians had never heard of. Vera, Bill, Pam, Don, Carol, Judy, and others worked tirelessly, providing support and understanding when we were down, practical solutions to the daily challenges of dealing with MSA, and open discussions on potential treatments. The advice on prevention and aggressive treatment of infections was far and away the best medical advice we received, which I’m sure has led to better and longer lives for many MSA patients. Their sponsorship of local support groups and the annual MSA conference was invaluable in lessening the sense of isolation associated with this rare and debilitating disease. Although my brother unfortunately is no longer with us, he would have been deeply gratified to see the growth of this informal network into the MSA Coalition that has been a gamechanger for MSA patients and their families. They are a tremendous resource for patients and caregivers, offering practical advice on dealing with the day-to-day challenges of MSA caregiving, the healthcare system, and financial and legal issues. The MSA Guide is an Their advocacy efforts have increased awareness of this disease both in the general public and the medical community, leading to better supportive care for MSA patients. Finally, the MSA Coalition has been groundbreaking in their support of research on causes, diagnosis, and treatment of this rare disease that had been largely overlooked by the research community.
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Our family discovered the volunteers that eventually became the Multiple System Atrophy (MSA) Coalition 20 years ago and has benefited from their advice and support. Members of this organization have worked tirelessly to aid patients and their loved ones who suffer from multiple system atrophy. Through education of the medical profession, patients, caregivers, families, and the general public, and through fundraising for research, this organization has helped improve both survival and quality of life for those with MSA.
The MSA Coalition is an amazing nonprofit group, they are filled with a group of people that care, when my husband past away in 2020 I didn’t know where to turn them I found this group of people that were going through the same as I was. I became caregiver to a man that worked all his life for us, my girls and I miss him but know he is still with us. I will always be grateful to the MSA Coalition I hope to give back and help others. Thank Margaret
When my dad was diagnosed with MSA-C in 2015, we found The Multiple System Atrophy Coalition to be an incredible resource for us. By attending the Family Conferences we learned about ways to improve his quality of life as well as ways to perpetuate his legacy. When my dad decided to donate his brain for MSA research, we were introduced to the Brain Support Network who helped us every step of the way. I’ve met dear friends through different MSA Coalition events that have brightened some difficult days.
The Multiple System Atrophy Coalition is an amazing organization that provides tremendous support and education to my family during our journey with MSA. From the phenomenal Family Conferences to the dedicated social media presence, my family found an incredible community to walk alongside us during a very difficult time. We couldn’t have provided the level of care to our loved one without this organization.
When my late husband Dan Miller’s diagnosis migrated from Parkinson’s Disease to Multiple System Atrophy in 2014, I turned to the MSA Coalition to learn more about what we faced. I found a wealth of information on the Coalition website, and soon had received DVDs of past annual conferences where I could hear the top experts answer our most urgent MSA questions. Coalition-sponsored Facebook pages became another critical source of support during these tough times. Some of the connections I made there even became friends for life. I was stunned when I realized these great resources were basically the work of dedicated volunteers. And when we decided to donate Dan’s brain for MSA research, we turned to the Brain Support Network, another group I only knew of through the Coalition. In the nearly five years since Dan died, I’ve grown steadily more impressed by the organization’s constant evolution in serving the MSA community and supporting critical scientific research through grants. Its website also continues to expand, and those MSA Facebook pages? They’re still humming with essential support and information. Meanwhile, Coalition leaders are hard at work at further improving patient support. What an important gift for families like mine! I do pray for the day when we all can celebrate effective treatments to slow progression of MSA and, better still, a cure. I’ve no doubt that when those moments come, the Coalition's indefatigable team will have played a key role. It’s just what they do, plain and simple. And I, for one, am forever grateful.
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When my late husband finally received his MSA diagnosis in 2014, neither of us knew much about the disease. We didn’t know anyone else with it, either. The MSA Coalition quickly became our mainstay for information and support. Though I never made it to an annual MSA convention, I “binge watched” the past conventions I could find and instantly felt better equipped to face what was ahead for my husband and our family. The MSA Facebook groups became lifesavers, too. I could share my deepest frustrations or darkest thoughts, and someone else always understood what I was going through. Those same Facebook groups also connected me to another MSA family living less than a mile from us. We two wives became a support group of two! I lost my husband in 2018. Last year, I recognized one way I could help repay all the MSA Coalition folks who had supported us was to help launch a support group in my city. And we did, with the Coalition’s support and guidance. What a difference it makes to know you aren’t alone on this journey. Thank you, MSA Coalition, for being there for us and some many others.
I met Pam when a friend was diagnosed with MSA. Through this wonderful organization I learned how to deal with many of his issues especially when going to an ER. I was honored to become friends with many other MSA patients through Pam’s Facebook pages. They were a lifeline to me to compare stories. Sadly, all those beautiful souls have passed on as well. MSA Coalition brings MSA to the forefront so more people, especially in the medical field learn about this horrific disease. Thank you Pam Bower and MSA Coalition for all the hard work and caring.
I have been working in the field of MSA as a clinician and a researcher for the past 10 years. On this journey which is fulfilling my heart I was lucky to meet many nice colleagues and friends through MSA Coalition, a world leading patient organization devoted to fight MSA. Coalition volunteers are doing wonderful job to raise awarenss about MSA in the community, to educate patients and their families and help them with everyday struggles and to collect significant funds for the research. MSA Coalition is a founding source behind several international research projects which yielded important results. Thus, MSA Coalition is an important ally in better understanding and finding disease modifying tretments for MSA.
I first had contact with Pam Bower and Shy-Drager/MSA support since 2009 when there was nowhere else to ask for help and knowledge in Puerto Rico.Their support was crucial to my husband’s (Manuel Fernanndez Bueno ) quality of life and emotional well being. Although he passed away in Oct 6, 2017, I am thankful every day to Pam Bower and for the work the MSA Coalition did and continues to do and the research it sponsors.
I represented the MSA Coalition at Puerto Rico Alexis Brewer
When my dad was diagnosed with MSA, the MSA Coalition was so helpful with information and resources about Multiple System Atrophy! Everyone has always been so helpful and kind! We continue to support the coalition, even after his passing, to help others that have loved ones living with this terrible disease!!
I have to speak out about the MSA Coalition. My brother had Multiple System Atrophy and this is how I became familiar with this organization.
I couldn't have taken as good of care of my brother without their help. Day or night, my questions were answered, followed by pertinent information I could look into. I was able to speak directly with those who had so much to offer and I received a caring attitude and nine years later, still remain in touch and have also made life long friends.
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My brother and I walked in and sat down in the doctor's office. The doctor walked in and sat down and said I'm sorry you have multiple system atrophy. He stood up and came over and patted me on the shoulder and wish me good luck and walk out the door. With all the medical training I have had I did not understand what multiple system atrophy was so I did the next best thing, I began researching. That's when I found multiple system atrophy coalition. They were a great resource and although my brother is no longer with me, multiple system atrophy it's still a part of my life today. They are very knowledgeable and they will do everything they can to help ease your mind and answer your questions. I don't believe I would have made it through it without them the seven years I took care of my brother. They continue to grow and become more knowledgeable and today because of that I now help other families that have questions. One day we will find a cure.
My husband was diagnosed with Multiple System Atrophy this past March, which is a rare nearly unheard of neurodegenerative disease. I literally first stumbled across the MSA Coalition and the term Multiple System Atrophy several months before diagnosis while looking up some information at the advice of one of his doctors.
The week of diagnosis we saw the love screening of the MSA Coalition documentary, Driven to Help, featuring Austin Crawford. We have found the Coalition to be an invaluable resource while navigating this disease with poor prognosis, no treatment and no cure. The staff is warm and compassionate and many of them are either family, care partners or people living with MSA themselves. I highly recommend them for their research, support and advocacy of MSA.
My husband was diagnosed with MSA IN 2014 and was symptomatic since 2008. Many physicians were not familiar with MSA. The MSA Coalition had a few resources back then but has really become a source for support, information and research! I applaud their efforts in making MSA awareness and support their priority, thank you!
The MSA Coalition continues to be a resource, support, and outlet for me and my family even though my mother lost her battle with MSA in December 2016. Throughout her diagnosis, The MSA Coalition provided invaluable connection, answers, support, and HOPE. I have been fundraising for them in honor of, and then in memory of my mother since 2014 and continue to volunteer to this day.
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The MSA Coalition was truly a life-saver. My mother lost her battle to Multiple System Atrophy in Dec 2016 , 4.5 years after her diagnosis. During that time the Coalition provided immeasurable support, advice, and resources. We are far from a cure to this nasty disease but my dad, brother, and I made it through with the support of these people.
With nowhere near the resources of the ALS or Parkinson's Foundations, the MSA Coalition made up of volunteers who really care. They want to keep on the fight for their loved ones that are no longer able to fight. The annual conference, live-streamed, is incredibly valuable to current patients, caregivers, and even for medical professionals who are still trying to understand the disease themselves. I look forward to seeing what the next couple of years bring.
It's amazing to see how such a small organization can have a big impact. Their commitment to both the caregivers and patients sets them apart.
Always thoughtful, reliable, caring, professional a non profit that sets an example for others to follow!
MSA Coalition was a lifeline for my husband and myself.
It made the difficult journey of MSA easier for us to handle.
We met many wonderful people who had traveled this path or were still on it. Everyone gave us understanding and valuable information.
We attended support group meetings and attended National Conferences organized by this wonderful organization.
The members of The MSA Coalition are hard working and dedicated to providing recourses, information, connections and furthering research.
We would have had a dark journey without The MSA Coalition.
I will be forever grateful
Cindy Rechsteiner
I was diagnosed with MSA (C) in July ‘17. I attended the conferences in ‘ 17. ‘18 and ‘19. These conferences made me aware of all aspects of the disease process, treatments , research etc. being able to meet others with MSA is a valuable and friendly experience. The presenters second to none.
I became aware of the MSA Coalition when my husband was living with this disorder and I was trying to learn more about the disorder. I came across a online support group where Don Summer who was then the President of the Coalition often gave suggestions on how to help with symptoms , that often were very scary when you didn't know what caused it or what to do. He had a passion to help others and this I learned early on. After my husband passed I attended my first MSA Coalition conference . There I saw in person that the Charity stood behind everything it was about and when asked awhile later to volunteer , I did so as I felt the same passion to help others facing this disorder. I am thrilled at how much the Coalition has grown since then . The Board of Director who work to reach the MSA 4 pillars, Proud of all the volunteers and the will to want to help others who also face the same as they did when caring for their love one. Proud of the donors who have help to support all the funds that have helped the Coalition fund over $2 million in research and proud of the Scientific Advisory Board who picked the right research for that will lead to a cure .
Vera James
MSA Coalition Emeritus
When my husband Joel was diagnosed with MSA, we discovered the MSA Coalition and it has been a lifesaver for our whole family throughout our MSA journey. It is difficult for patients and families to navigate a rare disease like MSA, and the MSA Coalition provided us with invaluable information and support. We attended the annual conference in 2018 when my husband was in a wheelchair and we learned so much about living with MSA and about the latest medical research, and we met other patients and families who knew exactly what we were going through. We became friends with some of them and that provided a wonderful support system ever since. The MSA Coalition provides ongoing information about clinical trials and research, patient and family webinars, support groups, and so much more -- all of which provides a critical service to the MSA community.
I have been involved in other non-profits but have never encountered as many dedicated volunteers as the board members of the MSA Coalition. They are passionate, smart, organized, responsive, and always thinking about what they can do next to support MSA patients and families and to further the much-needed research into this rare disease. My husband passed away in February 2020 and our family cannot thank the MSA Coalition for the immeasurable support they provided to our family. It's an amazing, special organization!
I am proud to recommend the MSA Coalition as a Great Non-Profit. Managed entirely by dedicated volunteers, this organization does an incredible job providing patient focussed assistance, counseling, and advice. They fill the vacuum of knowledge about this horrible disease, providing educational resources for patients, families, physicians, and the wider world. Equally important, I am impressed by their work in funding basic research into the causes of the disease and potential therapies and hopefully a cure. You may trust that every dime donated to the MSA Coalition is put to good use.
The MSA Coalition has much useful information. I found the website extremely helpful when I was first diagnosed so that I was aware of what was to come. The hotline is manned by former caregivers
There are several Facebook support groups that I find very helpful.
In short, I think it’s a great organization.
MSA Coalition is a much needed resource for MSA clients, family, friends and advocates. They provide a community of support while providing awareness and advocacy to eradicate this awful disease.
My Aunt Linda passed away from MSA after a long, brave battle and we are grateful to the MSA Coalition for driving further awareness and support.
I'm very grateful to the Multiple System Atrophy Coalition for providing a space for research and community for a very difficult disease to deal with. I donate every year in memory of my mother who died of MSA 6 years after diagnoses at age 58. I don't hesitates to donate because I know the money is being spent the best possible way to find a cure for MSA.
Six months after I was diagnosed with Parkinson's disease, it was suspected that I had MSA. This diagnosis was subsequently confirmed. My husband and I knew nothing about this disease. We did a google search and we quickly found out about the MSA-Coalition. We called their number and soon thereafter we were called back. Not only were we given important information about the disease but we were given the time to ask all of our questions. Since then we have attended two of their annual conferences. Each of them was very well organized and included speakers extremely knowledgeable in the field. We were able to make contacts with a number of people which have remained a great support to us. Further, the MSA-coalition keeps us informed regularly of important research and/or other important developments about MSA. Through the organization, I was able to join support groups on line and on the telephone (monthly meetings) with other MSA patients.
The mission of the MSA Coalition is to build a much needed unified MSA community to fight this terrible disease. As an early-stage researcher, the MSA Coalition has been of invaluable support throughout my career by awarding me with a travel grant to the International MSA Congress two years ago enabling me to be exposed to cutting-edge research being performed in the field, presented by the international top experts in MSA. Furthermore, through a generous research stipend, the Coalition facilitated my research internship abroad focused on basic research in MSA, and it is only through their support and the skills I acquired through this period that I am able to continue the research on MSA that I am currently performing. I can't thank the Coalition enough for their support, but I can make sure to reflect my gratitude in my daily efforts in search for the cause and eventually a cure for this devastating disease.
The MSA Coalition is one of the most important sites for me, where I get reliable information about my disease. I wish we had something like this in Europe, but the MSA Coalition is there for all patients and carers worldwide! The very committed contributors, helpers and the online forum is a great support in the fight against this terrible disease. Also the professional medical advisory board and the many years of experience are a great and professional help.
Danke aus Deutschland!
The MSA Coalition has been a life line for my family since 2013 when my husband was diagnosed with MSA. I traveled from Los Angeles to Milwaukee to attend my first MSA conference and have attended at least 3 more while my husband was able to travel. The Coalition has shared so much valuable information (research, medical journal articles, clinical trial information as well as very practical coping tips) and has certainly had a positive impact on our MSA journey. I have participated in many conference calls with other caregivers and patients and also took advantage of the live-streaming of the most recent conference in Orlando. The volunteers are incredibly supportive. We rely on this group so much.
My story as a carer is so similar to many others, so I won't add much more other than to say, my sister Maureen started showing symptoms at age 54 yrs, the progression was fast, her motivation non-existent, she crawled into a shell & sadly couldn't find her way out & passed away 6 years later, 2 weeks after her 60th birthday. Living in Australia in 2012, so little was known about MSA & like many others she was misdiagnosed with Parkinson's Disease. Like a dog with a bone I became obsessed with Google, looking for answers that doctor's just couldn't give us until a wonderful Parkinson's nurse steered me into the path of The MSA Coalition & said "stick only with reputable sites". I made contact & received a heartwarming response from Vera James who told me more about my situation, than I told her. It was as though a weight had been lifted & someone actually believed me. Vera passed on my details to Pam Bower who invited me to join the MSA Australia/New Zealand Facebook page (which I didn't know even existed). Being able to talk to like minded people, made life so much easier & this is where I found my voice & a platform to raise it. It's now 8 years later & we still only have this dedicated Facebook page in Australia (originally set up by Pam Bower), which is why we rely so heavily on our international friends from The MSA Coalition amongst others to share information from the wonderful & informative webinars to links showing what trials are available or, at what stage they are at. The list goes on with the many downloads available & resources also at hand. I don't know where I/we in Australia would be if it wasn't for the MSA Coalition & their Facebook pages & many others (I think I'm a member of about 20 + in total) from all around the world. To all the volunteers who work at the Coalition & give up so much of their time & in particular my online Buddies Vera & Pam, I/we owe you a debt of gratitude for everything you have done for us & you kept me sane. To say thank you sounds so inadequate so all I can add is "good onya mate/s & cheers from DownUnder"
When at 52, I noticed that something was very wrong, both physically and mentally, my journey to diagnosis began through years and multitudes of medical specialists and two misdiagnoses which caused substantial costs, unnecessary / risky treatments and emotional turmoil for myself as well as my family. As all known diseases/disorders were ruled out, I was left with a diagnosis that is very rare, no cure, no treatment and aggressively fatal. The Multiple System Atrophy Coalition has been a tremendous source of knowledge and support navigating as we navigate the indignities my brain inflicts on my withering body. This support includes virtual online support groups, lists of the very few knowledgeable specialists across the globe, and fundraising for the very few research projects undertaken each year. I have passed through the stages of disability to mostly bed-bound now. The isolation is devastating which makes the online support so valuable in sustaining my hope and mental fortitude. I am 62 years old with a loving husband two sons in their early 20s. I'm not certain what each day holds for me except for my faith and hope.
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What do you do when you are diagnosed with a rare, terminal, neurodegenerative disorder with no cure? Struck down in my early 50s with children still at home, and a career I loved but could no longer function at the same level? All the internet searches were so disheartening and most doctors have no experience with it which delays diagnosis and symptom management by years. I found the MSA coalition and there were other people like me all over the world! This international group advocates for research, fundraising and provides support for patients and caregivers. It is so appropriate that March is MSA Awareness Month and I have passed the 5-7 year prognosis celebrating my 60th birthday March 6th! Yes, I can no longer walk, swallowing and eating are difficult, my vision has been affected, and I am mostly bedbound. But I'm still here and thankful for every day I am given.
They have been a God send. I was diagnosed at the beginning of September and by the end of September; I had spoken to someone who helped me connect in many ways and relieved a lot of fear, attended the conference, which was so informative and helpful. They also have the most complete written information on the disease that we have been able to find. I cannot thank them enough for all they have done for me, for my daughter/caregiver and to all those involved with this horrible disease.
MSA Coalition provides services to patients, caregivers, doctors and researchers that are not available from any other organization. Its staff and volunteers work tirelessly to support, educate, advocate and drive research for effective treatment and cure of this awful disease. Everyone whom this disease has touched owes a debt of gratitude to MSA Coalition for all it has done and continues to do for all of us.
This organization provides a lot of support and information for people who have been diagnosed with MSA and for their family and friends. It is informative for both the patient and for the caregiver! And, the organizers work hard at keeping up-to-date with the latest medical news on MSA.
They work hard to help the research and make awareness about msa.
They give informations and help to patients and caregivers
When my husband received his diagnosis 7 months ago, our neurologist told us to look into this organization. The person on the help line was very informative and sensitive. The info on the website about symptoms and progression is very helpful. We often print info from the website to give to specialists.
I had the privilege to attend the annual conference in Orlando. Meeting other spouses who are on the same journey was amazing! The speakers were so knowledgeable, and I learned so much. I hope to attend again to learn more, and make more personal connections.
The coalition supports research, which is the only way a cure will ever be found for this awful disease. They also administer a private Facebook group. While the posts are often difficult to read, the group is a great place to ask questions and get information. It’s great to regularly connect with others dealing with the same types of of issues that we are. Without the support of this organization, I would be lost.
On September 6, 1997 Dad was diagnosed with Multiple System Atrophy (MSA). His body succumbed to it's effects on June 3, 1998. I say his body because he always held out hope for an effective treatment if not a cure. Today I carry that hope for him. Due to its rarity, no one institution or country can carry the research load. An international effort, engaging some of the best minds in neuroscience, from established investigators to up and coming new researchers with fresh perspectives and novel approaches, is needed, and receives some of its funding from the Multiple System Atrophy Coalition. Working together I believe Dad's hope will, one day, become a reality - a treatment if not a cure.
Working in research can be difficult in and of itself, but it becomes a greater challenge when a rare disorder such as MSA is the subject of research. Many projects don’t receive the funding necessary to continue or even to get started because funding is prioritized to help those affected on a larger scale. This is a tremendous hurdle to overcome, a devastating one to those affected by this progressive disorder and one that personally made me realize that we are all we have. When a particular grant for research was not renewed and we could not cover the costs of continuation, the MSA coalition stepped in and ensured that not only the research would continue, but also that other collaborators from around the world would be interested in joining the study. Their concerted effort both promoted the research and also helped spark interest for both patients and investigators. And they didn’t stop there; the MSA coalition also rewards outstanding research with an opportunity to share it at international conferences such as the annual American Autonomic Society conference. In 2019, I was awarded this prestigious honor and had the opportunity to present to various experts in the field of Autonomic and Movement Disorders what our team had accomplished thanks to the help of the MSA Coalition. To me, their contributions directly propel the research we conduct on a daily basis in our mission to understand the disorder well enough to find a cure. And my dream is that one day we can finally say that we defeated MSA.
My mother, Eileen Dyas, was diagnosed with MSA the summer before she passed away in October 2017 at the age of 68. As a result, we (unfortunately) found out about the MSA Coalition and all of its resources a bit late. Since her passing, we've utilized the Coalition's resources, supported its mission, and attended the annual patient and family conference which helped us connect with others in the community, further understand the disease and provided us with needed closure. With its focused mission to support patients and families, educate the medical community, advocate on behalf of MSA patients, and support global research funding and brain donation, the MSA Coalition is doing important work to find a treatment and cure for this rare and terrible disease.
In late 1987, my wife Charlotte saw our PCP for tiredness and they gave her thyroid pills which helped somewhat. In 1990 she was stumbling and changed jobs to have shorter hours and the doctor sent her to a neuro who tried her on Sinemet and she responded fairly well. By 1992 they referred her to a movement disorder specialist who said more than just PD and probably OPCA. In 1995 our neurologist got her into NIH and they said probable MSA (Sporatic OPCA is MSA). By this time she was losing weight and pretty much bed or w/c dependent. She continued to decline and had a severe infection and coma in the summer of 1998 which led to the installation of a PEG. With the PEG she gained weight and recovered a lot of her movement which was lost to the infection. She died the day after Thanksgiving 2001 almost 12 years after her first PD symptoms. She fought a good fight. In 1998, I discovered the Vanderbilt Shy-Drager Syndrome list server (the forerunner of the MSA Coalition). Pam Bower was there before me and suddenly I had experiences of caregivers all over the World. Don Summers took over the National group about that time and was already finding money for annual national conferences. That same group is now the MSA Coalition and is a super dedicated group that now not only provides conferences, but also grants for MSA research. The picture is my wife in May 1998.
The MSA Coalition
In 1994/95 I was diagnosed with MSA at the Hershey MedicalCenter in Hershey, Pennsylvania, although at the time the disease was called OPCA. Regrettably, most people only live nine years after diagnosis, with some lasting as long as 18 years. Some of these data were derived from researchers affiliated with the MSA Coalition, which has done a great deal to bring attention to this devastating and incurable disease. And believe me, anyone who suffers from ataxia and related symptoms has a very difficult time of it. In my case, the causal agency for my symptoms is now thought to be cerebral ischemia, TIAs, and associated cortical atrophy, and not MSA per se. The vascular problems have destroyed much of my coordination and are now severely impairing memory and cognitive functions. Indeed, it is unlikely that I will recall having written this piece in a few days or weeks.
The point is, MSA is very difficult to properly diagnose and nearly impossible to treat at present. It can mimic many conditions, such as Parkin's Disease and a wide range of other neurodegenerative processes. I lived for over 20 years under the MSA diagnosis, and there were sudden flareups that made it impossible to do much of anything. But unlike most MSA patients, I kept bouncing back. It would often take some time, but many functions eventually returned. That doesn't usually happen with MSA, although that umbrella term includes numerous variants. With me, the recoveries were probably associated with regeneration following multiple small vascular traumas, although I'm now at the stage wherein a letter like this can take some days to complete.
The MSA Coalition provided me with much information and hope over the years, with hope being the only thing that kept me going. And although it is no longer felt that MSA is the cause of my decline, I still feel kindred to those who are suffering from it. In truth, all neurodegenerative processes are struggles that few healthy people can imagine. One wakes up exhausted, dizzy, and unable to walk a straight line--on those days when walking is an option. I am blessed to be as able as I am, and my heart goes out to those MSA sufferers who know only the long gradual decline that characterizes the illness. My mind is now entering into a phase that often makes it impossible to recognize my own caregivers and doctors. Yet I feel blessed. I am part of a community that knows that trying is fundamentally important to finding meaning and joy in this life. We are not alone as long as there are organizations like the MSA Coalition to help us. We have our friends, our families, and each other. And no matter what the future might bring, those blessings give us reason to go on. Hope lives.
My dad, Marc, was diagnosed with MSA-C in 2015. At the time, my family essentially knew nothing about this rare disease and we needed to better understand his diagnosis. When we learned that there is no curative treatment for MSA, we committed our time to understanding his symptoms, collaborating with doctors and finding ways to improve my dad's quality of life. Over the last four years, we've established the best symptom management care plan for my dad, of which we completely attribute to the MSA Coaltion.
As a soon-to-be graduate with a Masters in Social Work, I see first-hand the efficiency and dedication of the MSA Coalition in providing MSA patients, families and caregivers with the most optimal resources, research, support and education. When you really pause to consider how rare and complex this disease is, it feels reassuring and comforting to know that the coalition is wholeheartedly focused on helping those affected by MSA navigate this journey. Each conference, webinar, support group and fundraising effort is thoroughly thought through and the information and wealth of knowledge the coalition shares with the community is unparalleled.The MSA Coalition also provides guidance on all things MSA-related, from the most durable medical equipment to recommendations for specific therapies. The sense of hope and abundance of resources our family has received from the coalition has completely changed our lives. I encourage anyone impacted by MSA to become involved with this wonderful organization because the MSA Coalition will change your life too!
As a young professional studying and working in the field of research, I couldn't have asked for better support than what I received from this group. The MSA coalition has constantly provided funding for several research projects aimed at further understanding this disease in hope of finding a cure. In my personal experience, the MSA coalition have awarded me my first grant as PhD student and supported my work throughout the years. Years after finishing my initial projects on MSA, we are still in touch and there is a reason behind that. The MSA coalition is not only a support group but also a family for patients and professionals in the field.
I first sought medical treatment for a MSA symptom in 2004, and was accurately diagnosed in a teaching hospital in 2008. Like most lay people I had never heard of MSA. I went online, and discovered the MSA Coalition, although they went by a different name back then. I learned much on their website.
I joined their online discussion group about MSA and learned much about living with this disorder. I also was able to give and receive support from people with MSA and current and past caregivers.
I attended their annual conference in Nashville and have now attended three. All have been excellent. They have provided excellent info about MSA, the latest in research, and (what I like best) the opportunity to meet others with this disorder, and to talk directly with new friends I have made.
My name is Staffan Rundberg. I’m 53 years old and and I live in Stockholm, Sweden.
I was diagnosed with MSA-C in February 2018, which was a shock of course, since this disease is so rare and devastating.
My first symptoms were lack of balance and problems with hitting the right keys on my computer as well as a general feeling of something just not feeling right. I also had problems with coordination and slurred speech. I knew there was something wrong, but people around me didn’t really believe me.
After meeting several doctors, I finally met a specialist in neurology. He admitted me to the hospital for a few weeks, and initiated a series of tests. It took a year to get a diagnosis - multiple system atrophy, the cerebellar type.
Today I’m in my fifth year of the disease. Presently I use a wheelchair most of the time, and my speech has progressively gotten worse. Despite this, I try to live a ”normal” life. I have had to stop working, unfortunately. Becoming disabled in mid-life has been, and is, a whirlwind, but I try to accept what is happening to me. I’ve come to understand that acceptance is a big part of moving forward.
After getting the diagnosis MSA-C, I felt a big need to reach out and talk to and meet others affected by this disease. I found the MSA Coalition, among others. This is an international coalition, with the aim of finding a cure for MSA. I have gotten to know people from all over the world through the MSA Coalition.
They provide knowledge and arrange a yearly patient and family conference and I participated in the most recent one held in San Francisco in the fall of 2018. I look forward to participate in upcoming conferences if I have the strength and possibility of doing so.
I am posting this testimonial in memory of my wife Carol, who passed away April 19, 2018, just 9 days from what would have been our 45th wedding anniversary.
My wife was diagnosed with Multiple System Atrophy (MSA) in 2013. The neurologist who gave her the diagnosis mentioned the disease ultimately will affect her automic systems. We had no clue to what extent that would be, or what we needed to consider for the future care of my wife. Most doctors that she was seeing asked “what is that” when we informed them of her diagnosis. We usually had to educate the doctors and medical staff as what her disease was and what it could or would affect. That was a very frustrating experience for both my wife and me. In researching her disease i came to find out about the Multiple System Atrophy Coalition, being one that usually does not join such organizations, joined, hoping to fibd out what we could expect. I am ever so happy that we did. Not only did we find out what we could expect from other members of the coalition, but we found a group of people so willing to help us with questions we had, suggestions on what we could do, or use in combating the affects of my wife’s disease. Th coalition was addressibg the frustration we experienced dealing with doctors and other medical personnel by working to raise the awareness of this dreadful disease. The coalition sponsored meetings, webinars and fund raisers to that end, along with group sessions that educated the caregivers in vital subjects such as Medicare/Medicaid coverage. We would have been totally lost had it not been for our joining this very caring organization.
I was diagnosed with MSA in Feb 18. I luckily found this group to be the best place to turn to for literature, knowledge and support that, others ar suffering. The MSA Coalition is determined to find a cure and myself along with family members are grateful to have this Coalition working for us!
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I have recently diagnosed with MSA after 2 years of various Neurological Symptoms. With the amount of information and support I’ve received from the MSA Coalalition it has helped me understand MSA far better. My family, friends, and coworkers have gone onto not only read and join the MSA Foundation they helped me raise $500 the first week I was diagnosed with MSA. I plan on educating as many as I can to get the word out about this organization and MSA. Thanks for all you do!
On November 25, 2013 Liz and I were told that she was diagnosed with possible Multiple System Atrophy – Cerebellum (MSA-C), a very rare terminal neurological disease that resembles Parkinson’s with no known cure. Unfortunately, MSA progresses rapidly and within 2 or 3 years of symptoms it impairs walking and balance. Most are in wheelchairs by the 4th year and eventually become bedbound. The average person lives about 6 to 10 years after the initial symptoms start. Liz passed within 5 years on December 20, 2018.
We could not of made this journey without the support and resources of The Multiple System Atrophy Coalition. This organization is about dedicated friendly volunteers with numerous experiences helping the community of people with a very rare incurable brain disease. They offer a tremendous amount of information on their website that is specifically related to Multiple System Atrophy. As a caregiver for my wife with MSA-C, their website is one of the first places that I went to looking for answers, information or direction. They are a great organization that represents our MSA community around the world to try and find a cure. My family thanks all of the dedicated volunteers.
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On November 25, 2013 Liz and I were told that she was diagnosed with Multiple System Atrophy (MSA-C), a very rare terminal neurological disease that resembles Parkinson’s with no known cure. After receiving this diagnosis, we immediately wanted to know everything about MSA-C and found The Multiple System Atrophy Coalition website. We found that The Multiple System Atrophy Coalition organization is about dedicated friendly volunteers with numerous experiences helping the community of people with a very rare incurable brain disease. They offer a tremendous amount of information specifically related to Multiple System Atrophy. As a caregiver for my wife with MSA-C, their organization is one of the first places that I go looking for answers, information or direction. They are a great organization that represents our MSA community around the world to try and find a cure. My Family and Friends thank all of the dedicated volunteers.
In 2014, my mom was diagnosed with Parkinsonism, which was later re-diagnosed as MSA. The MSA Coalition has done great work, funding studies, and providing outreach and public relations for the disease. Getting the word out about a rare disorder is challenging. However, for those that suffer with MSA, they face even greater challenges. The MSA Coalition has done a wonderful job at fundraising, organizing volunteer events, and promoting outreach through various methods. I believe in their mission and what they do, so I applied for a spot on the General Advisory Council, and was awarded one. I am very thankful for the opportunity to help this non-profit that helps many others, including my mother.
-Cory Hutchinson
I am a nurse caring for a simply remarkable person, who inspires me everyday! I had very little knowledge of MSA and no experience caring for someone with this condition after 15 years in nursing. In early 2018, when we were trying to find the best solutions and answers to so many questions, we turned to the MSA Coalition. Needless to say, we wouldn't be where we are today with our care without them.
After years of trying to find answers to his symptoms my 79 year old dad, Jesse, was diagnosed with Shy-Drager Syndrome, now called Multiple System Atrophy. His neurologist took me aside and told me that my dad would probably only live for another 6 months with this rare disorder. While researching and trying to find out more about this disease I found this wonderful group of people who were going through many of the same things my dad was. It was the only place to find answers to what was happening and everyone was so willing to help each other. There was always someone researching and finding the newest information as well as suggestions for caregiving. We could call the support line at any hour and find a friendly voice to help us. This was a tremendous help to our family. There were answers and others who really cared. I know that my dad would never have survived as long as he did without our association with the MSA Coalition. I will remain forever grateful for this organization and the dedication of so many. My dad was almost 92 when he joined the other MSA Angels. I am so thankful for those extra years made possible by this MSA Coalition. We had him all of those extra years! In that extra time my dad was able to meet his beloved great-granddaughter and namesake, Jessica.
Pam Bower, Vera James, Gary Rose, and Judy Biedenharn were just some of those educating all of us who were looking for answers. They continue to do so and have moved forward with many more ways to reach out and search for a cure.
My mother was diagnosed with Multiple System Atrophy in 2014. We were lost...doctors didn't know much about the disease and we knew no other people who had it. When we found the Multiple System Atrophy Coalition, it was a great relief. The services and information about MSA (especially the brochure about what MSA is and its symptoms) they provided were invaluable and we used it again and again with our doctors, during ER visits, and just to educate family and friends. We attended one of the MSA Coalition's annual conferences and my mom made friends with others who had MSA. The support was immeasurable. My mom passed last year, and the outpouring of love from the MSA Coalition and the people we met through them was overwhelming and helped us through a very hard time.
After getting diagnosed with MSA, the MSA coalition has been so helpful to us in many ways. From signing the registry to answering questions about stem cell therapy to clinical trials, to where to find information the MSA Coalition has been very helpful to me Thank you for being there to answer my questions and especially Pam Bower thanks for all your help and being part of the MSA Coalition
My father was diagnosed with MSA-C in 2015, although presenting symptoms for years prior. My family and I had never heard of this condition and felt helpless given there is no cure. We devoted our time to finding the best doctors, best care team, the best methodologies for symptom management, and ultimately have been able to provide our father with the best of the best due to the MSA Coalition. The MSA Coalition has information, knowledge and a patient / caregiver / doctor community and network that provides both hope and resources to make this journey possible. We've learned to really live life and not hide from life due to circumstances. We appreciate this community, lean on this network, rely on the coalition and their support as much as possible. I urge anyone who is impacted by MSA to do the same. It has been life changing meeting not only meeting the folks who volunteer their time to the organization, but also all those involved in the community.
When my brother was diagnosed two years ago we were all devastated. Then we found the MSA Coalition and it has been such a blessing. I'll never forget the first time I went to their web page and discovered that people are working hard to find a cure for this disease. They have given us hope, guidance and very valuable information. Prior to this I was mired in grief and unable to determine what was out there for us, and more importantly what was legitimate research. I went down many rabbit trails and always depended on the MSA to give me correct information and guidance. I'm so grateful and thankful that they are there for us.
I was diagnosed with MSA back in 2014. Although it’s a very difficult experience, I have been supported by my wife, my family, friends, caregivers and the MSA Coalition which has been right with me seeking new treatments and therapies all along. The Coalition has funded many studies and is working hard to eradicate MSA. Please help them when you get a chance.
In 2013, my husband started losing his balance often enough that it was noticeable. I encouraged him to see our doctor, who blamed it on aging. I pointed out that I was getting older, too, but not walking into walls or struggling to stay on my feet. We made another appointment, this time at a family practice doctor at a major university medical center. After a short test in his office, he sent my husband on to a neurologist.
I had never heard of multiple system atrophy until my husband and his neurologist both started talking about it as a possible explanation of what was happening. Once we heard the term, the first place we went for information was the MSA Coalition. They quickly shipped us DVDs and other information, and Pam Bower of the board quickly responded to every question we asked. After my husband’s diagnosis was confirmed, we made our way to two of the Patient and Caregiver Annual Conferences. These turned out to be invaluable sources of support, friendship, and education. The Coalition even makes these events available online, reaching as many patients and caregivers as possible.
The MSA Coalition has proved itself worthy of our support time and time again. I can’t imagine what it would have been like to face this diagnosis without the deep knowledge of this disease they provided to us.
In early 2014, my husband Scott was told by a neurologist that he had a Parkinsonism. He was then handed some literature about Multiple System Atrophy, and was told "this is your worst case scenario".
Here we are almost 5 years later, trying to live with that "worst case scenario".
Being a rare disorder, not a lot of information is readily available and I was gathering up what little knowledge there is out there. That's when I came upon The Multiple System Atrophy Coalition. This organization is a godsend to those living this horrible nightmare. The research, the conferences, the fundraisers, and the people in this community help all of those who suffer, and their loved ones.
Although we struggle daily, my husband and I know that if there is ever an issue we don't understand, or a question or concern, we can always turn to the Multiple System Atrophy Coalition for guidance and support. I'm not sure what we would do without this organization.
My husband Mike was diagnosed with MSA-C in June 2015. It took several years and tons of tests to try to figure out what he had. All the doctors were able to tell us was what he didn’t have. During one of our visits with a movement disorder neurologist that we had been seeing for six months, she was finally confident in giving us a diagnosis. I remember her saying it was MSA, a very rare brain disease that had no treatment and no cure. And it was terminal. We were in shock and wanted to know more about Mike’s condition. We found the MSA Coalition website invaluable. It gave us a lot of information and links to many helpful sites. It also kept us informed of upcoming events and research information and how to get people involved in fund raising for research for this rare disease. It also gave us information for support groups for both the patient and the caregiver. We would have been lost without this resource.
The Multiple System Atrophy Coalition is an absolutely wonderful source of information and compassion. When my Father was diagnosed with this horribly debilitating, life limiting disease so many physicians had never heard of this disease before, which made it near impossible to diagnose or treat. We had no idea when we heard “we believe he has Multiple System Atrophy” meant. When I googled what it was I was devastated, yet so very thankful to find in the next key stoke the MSA Coalition. They were so very wonderful with all of my questions and helped me through my stages of grief as my Dad travelled through his MSA journey. I made lifetime friends through their annual conference that they host for patients, caregivers and family. These folks have family members who are or have gone through this disease and I’m so thankful for their friendships. This organization is around 24/7 with their volunteer board trying to help patients and caregivers. They work tirelessly to raise funds for research to find a cure! I couldn’t be more appreciative and thankful for this organization.
I was diagnosed in 2012 with Multiple System Atrophy. The only thing I really knew about MSA was that there is no treatment, no cure and it is fatal. It was a feeling of disbelief, not knowing what to expect or how to manage this disease. I contacted the MSA Coalition support line and a very caring voice at the other end introduced me to the Coalition. The MSA Coalition has been a blessing. The Board Of Directors and volunteers are dedicated to giving support/ educate patients, families and caregivers. They fund for research, and each year organize the Patient/Family Conference. A two day conference with a panel of Doctors experienced in Movement Disorders. It's a time to learn, meet the Board of Directors, other patients , their families, friends and caregivers.
The MSA Coalition gives HOPE to a devastating disease.
My first awareness was when my brother Fred James was finally diagnosed with MSA I believe 21 years ago or more. My sister n law Vera was his sole caregiver and did her best to find out more about this dreaded disease. Fred once told me he will be totally aware he is totally trapped in his own body...Fred succumbed to MSA in January 2003.
It was then my sister n law Vera made a life long commitment in finding research for a cure for the other people affected from this neurodegenerative disorder.
That is when I was made aware of The MSA Coalition.
The MSA Coalition is dedicated to research, patient care, and caregiver education, education for healthcare professionals, emotional support, all research needs.
This all has to be funded!
Needed fund raisers, donations for research to accomplish a cure.
The MSA Coalition is wonderful in making use of these funds in research.
We need to speak out to make more awareness this will in return help get funds the for research on these neurodegenerative diseases.
This review is written in memory of my brother Fred, to all the other fallen MSA angels. To all the patients that are fighting this. And a thank you to the MSA Coalition and to Vera for helping me be aware!
A gifted neurologist completed a series of exams and tests and told me I had olivopontocerebellar atrophy (OPCA). It is better known today as multiple system atrophy (MSA). March is a month of attention to MSA and the struggle to overcome it. March of 2019 is also the time of my 94th birthday. I am thankful for all those birthdays, in part because MSA Coalition has provided so much encouragement. MSA Coalition supports scientific studies for a cure, and most valued for me, it enables relationships of sharing. Victims of MSA and their caregivers meet each other by email, separated by highways or oceans or continents, coming to know each other, nudged and supported by MSA Coalition.
Five years before my diagnosis of MSA-C, I spent a great deal of time going from DOCTOR TO DOCTOR searching for answers. I got none, yet being in the medical field for many years I knew my body and I knew something was drastically wrong. Just loosing my balance without cause, my legs freezing upon standing and not being able to move them, very unsteady gait.
Finally I found a very caring dedicated Neurologist who spent a great deal of time with me on me very first visit. After two hours of doing many tests, asking many questions, looking at my MRI, he sits my husband and me down and tells me my DX. I believe you have MSA-C. I was a Neurosurgical nurse and have never heard of MSA. He explained in great detail what it was but all I really heard was that it had no cure and it was fatal. My trip home was very quiet. Neither my husband or I could even speak. We were in total shock.
Immediately I was on the computer trying to find out as much as I could about this disease. I found the MSA Coalition site and found it to be full of information regarding just about everything you needed to know about this dreadful disease. I immediately joined the Coalition and within a couple of days I received a call back from one of their volunteers. His wife sadly had the disease and his promise to her was he would carry on the fight to get more answers and do whatever he could to help find a cure. He was very knowledgeable about MSA, case studies being done and medications being used to help some if the symptoms. I was invited to join many of the Coalitions members only private discussions groups. My husband has joined the private care givers group.
This group has become my lifeline. Communication between each other is actually vital for motivation to keep the fight going, even though many times we may wonder why. Through my own experiences as a Neuro Nurse, I remember every single day telling my patients to never give up, we cannot judge or decide when that day will come when God calls use home. I have seen miracles that I cannot explain, I have seen people been given no hope for survival and remain in commas for many months. Yet though their mine was terrible injured, they could hear. They could hear the love and encouragement from their family, love ones and friends. Yes, they also heard me. I had been told that many times.
So because if this wonderful Coalition with dedicated volunteers I have been given the opportunity once again to say, do not give up, find something or someone to keep you motivated, listen to beautiful music, if you cannot read have someone read a book to you. Do not shut people out because of your disease as most of your love ones want to share their daily activities with you. They want to keep you knowledgable about their on going lives.
Whatever simulation you can get will remove the sad thoughts, the fear, the anxiety that this disease brings.
Thank you MSA Coalition, thank you for the opportunity to look forward every day to read someone’s story and for me to be able to respond to them and hopefully be able to help them on some way.
The MSA Coalition is a unique community of dedicated, caring people brought together by the common goal to ultimately defeat an insidious, rare disease - Multiple System Atrophy. Patients, caregivers, families, friends and researchers are energized by the incredible support they receive from the Coalition. And supporters of the nonprofit Coalition know that their donations will be managed and allocated to the highest standards of charity giving.
Dealing with a progressive, terminal disease so rare can add isolation to the emotional and practical challenges of the battle. My late wife and I so appreciated meeting and sharing with people that spoke “MSA”. The MSA Coalition is a truly remarkable collection of stakeholders that tirelessly demonstrate strength and compassion.
After several years of having no success trying to figure out what was causing all my symptoms, and going to hundreds of doctors, clinics, hospitals, and testing facilities, I finally went looking online for information on anything that had all my symptoms. I was startled to find that MSA had all of them. That led me to the MSA Coalition, and Pam Bower, who were invaluable in helping me find information about MSA, support groups, etc.. They had tons of links to medical articles, and local groups across the US, and a patient-only group of others like me that I could talk to, which has been wonderful. I found I wasn't the only one who was having troubles like these, and not the only one having trouble getting any kind of diagnosis. I was able to get all kinds of help and advice. I am now getting closer to a diagnosis, and was told finally by a new neurologist that I either have MSA-P or Parkinson's. I am waiting results on a brain MRI, taking Carbidopa/Levadopa to see if it stops the tremors I'm getting now, and next step will be a DAT scan. The MSA Coalition has been invaluable in this rare disease, and the neglect it gets from the medical community.
There were many "it might be" diagnosis conversations with my brother, most of which had easily identifiable and familiar disease names. But none of them stuck. So the day when his text came stating "We now know, I have MSA" (cricket-sound) yeah, me too... I had no idea what that meant. Nothing is easy about MSA. Thankfully we found this coalition. PJ's celebrated his birthday this year with him reaching his $500 goal in fundrasing for this coalition and is motivated to to help spread information about this coalition and MSA specifically. If you have a moment click on it to learn and donate if you can.
My husband was increasingly ill for 15 years and we couldn't get a diagnosis despite trekking from one specialist to another to another to another. When we were told to see a neurologist who specialized in movement disorders because one doctor guessed he might have Parkinson's. We made an appointment after asking around a lot, doing a lot of research, and talking to many generous people associated with various PD disease support groups. After having a couple appointments with that neurologist she told us she thought PD was not the right diagnosis but that MSA was. That, of course, led to another round of research and we were more devastated then we had yet been.
I went online at facebook and searched for MSA and discovered the MSA coalition. I applied for membership on both open and closed groups dedicated to supporting and informing people with MSA and we were accepted into membership.
FINALLY, we had found people who knew what we were talking about! People who were incredibly warm and accepting and informative and supportive. We found a community of people suffering both as people with MSA and caregivers. They didn't make the terminal journey easy or pleasant but they made it not lonely. We had been lonely for 15 years. The MSA Coalition people were responsive, filled with understanding and useful suggestions and companions on our sad journey.
I can't thank them enough for what they gave us doing his last few years. I'm alone now, grieving, and still not alone because MSA Coalition continues to be available with advice, consolation, good suggestions, kindness, warmth, inclusiveness. . . they are wonderful people.
I will continue to donate to them as long as I can.
Back in 2011 my partner Dale started having vague health issues nothing that we could put our finger on and it was put down to stress by us and our GP. 2.5 years ago Dale was under enormous stress and I noticed that he was walking into walls and his speech was slurred. This lead to our GP ordering an MRI and this showed that Dale's cerebellum had shrunk and Dale's neurologist said that Dale more than likely had Degenerative Cerebellum. Last year Dale's health deteriorated and after his GP checking him and after seeing 2 neurologists for their opinions in Feb this year he was diagnosed with MSA-C. Even though we are only at the beginning of this MSA journey and at times struggling to take it all in and dealing with day to day life and its many challenges this website has been a great source of information and comfort. We live in Tasmania Australia and we feel surrounded by love and support right around the world.
Kudos for raising awareness of this horrible disease. My dad was diagnosed with this disorder and died a few weeks later in 2009. He's the guy sitting in the picture; I'm the one in the middle with the dark shirt. It was their 50th wedding anniversary.
Our story with Multiple System Atrophy began in late 2005 after my wife was diagnosed with MSA at Mayo Clinic. As MSA patients and caregivers know, this rare disease is devastating to the patient and family, and since it is quite rare, there are few resources or support organizations available to provide the much needed support for MSA. That's where the MSA Coalition meets a real need for the MSA Community.
After working with the MSA Coalition throughout 2016, especially at the annual national patient and caregiver conference, in 2017 I joined the Board of Directors. This organization is 100% volunteers - all who have direct links to MSA, having lost our spouses, parents or siblings to this disease. Whether the Board is planning for the annual conference, providing research grants, sponsoring MSA Advocacy meetings, providing key information to patients via the MSAC website, talking to patients and caregivers over the support hotline, or sponsoring important meetings with a broad cross section of research scientists and clinicians from the MSA worldwide research community - the best interests of the patients and their families are always the top priority.
Beyond the Multiple System Atrophy Coalition's financial transparency and fiscal responsibility, supporters should know this Board consistently leads with integrity and a laser focus on the patients' best interest at heart ... because we care about MSA patients and caregivers who are fighting the same battle that we fought.
I am very proud to serve as the Vice Chairman, Board of Directors and to volunteer my time to this amazing organization. Every decision we make is made with MSA patients in mind. Our transparency, processes and programs are second to none. As an example, our MSA Research Grant Program has provided much needed hope to the MSA Community. Over the past 4 years we have funded 36 research grants from around the world for more than $1.6 million. Each grant was scored and vetted by our world-class scientific advisory board and guest reviewers. This process ensures their is no bias and that the most promising MSA research is being funded. I am also proud of our primary sponsorship of the most important and largest MSA Congresses and scientific sessions, along with hosting the 1st every Global Advocacy meeting. The MSA Coalition is truly committed to building hope for the MSA community and our work has demonstrated meaningful results.
Hi, my name is Grace and I have MSA. I am 51 years old and my children are only starting their young adult lives with my baby now 20 still in College. They are not in a position to really help me. My husband died from cancer in 2008 so I live alone. More than two years ago convinced there was something Wrong with my ears and my balance. I went to the ENT only to find out there was nothing wrong my ears and she sent me for an MRI which showed an issue and the doctor suggested I go and see a neurologist. I went to two different neurologists and both told me I had Spinal Cerebellar Ataxia. A terminal illness with a longer prognosis than MSA. I had never spent a day for illness in the hospital, in my life, and I took vitamins to stay healthy so I was in disbelief that I could have anything go so wrong. At the same time my mother had just been diagnosed with pulmonary fibrosis, she passed away this year and I was upgraded to Multiple System Atrophy after my bladder started having issues and my blood pressure dropped dramatically upon standing.
I had to give up my job as it was a physical position. I tried for a desk job but to no avail.I must have looked like a poor prospect with a bad leg and a slurring voice. My age didn’t help either.. This had never happened to me before. I never had a problem getting a job and my mind was still so active and alert. And so I applied for disability. It took a while but I finally got a check. I had to sell my house of 20 years because Iit had 4 sets of stairs. Now I’m ready for this challenge. I love my new level apartment . My important friends have been a real help and insignificant friends have disappeared. My family except for my children all live in Ireland. I have hope that a cure will be found. Thanks to the coalition and fundraisers, research is getting close. What I wouldn’t give to see a grandchild someday! Hey, you never know!
My mom, Joan Gardner, struggled to find a diagnosis that would explain why she experienced so many physical symptoms. She saw many doctors including specialists, but none could give her any answers. She was falling and having great difficulty with her digestive system. She began shuffling her feet and losing her balance. Neurologists couldn't tell her why this was happening. At one point someone suggested she might have Parkinsons. About 6 after her symptoms began to progress, she was sent to nephrologist as her blood pressure was all over the place. It was then that we learned that mom had the symptoms of a disease called " Shy Drager" otherwise known as Multiple System Atrophy. Falls became regular, urinary tract infections were non stop and my mom suffered from what we learned was gastroparesis. Every day was a struggle for her. She also had symptoms of dementia which were initially diagnosed as early onset dementia, but was likely Lewy Body Dementia closely related to MSA. I became my mom's primary caregiver. It was difficult to see my mom struggling day after day. The MSA Coalition and Carol Langer were my only supports. Once a month I waited to connect with others through a caregiver webinar to hear that I was not the only one experiencing these feelings. Carol and Vera were informative and compassionate. I knew I finally had support.
Each fall we walk to bring awareness and at the holidays we contribute to the Holiday fundraiser with the hope of finding better diagnostic tools, treatments and hopefully a cure.
Research projects funded by the MSA Coalition will hopefully help find answers to help with proper diagnosing, better treatments and of course a cure. Research is costly. Thank God through donations and the team put together through the Coalition, they are able to provide researchers with funding to do this important work. The members of the Coalition work tirelessly to fund a patient/caregiver conference each year, and man a patient/caregiver support line. Printing materials to bring awareness, webinars, maintaining a website that provides valuable information cost money. It is the only organization I fundraise for. This is a top notch organization and I am so thankful for all they do.
When I received dx for.MSA, I was scared and confused. It is such a rare disease, my family doctor hadn't heard of it. Finding the MSA Coalition has been a blessing. The website contains a world of useful information, the staff is always responsive quickly and the Facebook groups are wonderful allowing patients to connect.
Blake Adams
My father, Stephen Wall, was one of those people who just had this amazing effect on everyone he met. He never met a stranger, and touched the lives of many. His kindness and sense of humor were second to none. He was my best friend. One day my dad woke up with flu like symptoms. After some time in the hospital, they misdiagnosed him with Parkinson's. Shortly after, my mother took him to Charleston, SC for special testing. It was there that they diagnosed him with MSA and my world was turned upside-down.
I'll never forget the day he printed out information on the disease for me and I read the words 'Prognosis from diagnosis is 10 years'. It was in that moment I knew my father was dying. My worst fear was coming true. How could ten more years ever be enough? How was I going to face this?
I moved back in with my parents to be a helping hand. I also wanted to spend as much time as possible with my father. Over the following years we spent every weekend together, seeing movies. I came home for dinner from work every night to spend time with him. Over the years I saw him start to deteriorate in front of my eyes. He was in pain 24/7 and no medicine could touch it. His muscles were constantly seized up and he had to walk with a walker. He never lost his spirit though. He cried and fought, and it was hard, but he got up everyday and put a smile on his face and lived as normally as this horrible, unfair disease would let him.
A week before Christmas in 2012, he woke up shaking, with a fever. We took him to the hospital thinking it was just another bought of pneumonia. It wasn't. Fluid had built up in his lungs because the MSA wasn't allowing his lungs to heal. His lungs were failing. On December 19, 2012 at noon, my father passed away peacefully in his sleep. They had him sedated and comfortable, and for the first time in 6 years, no longer in pain.
I didn't know about the MSA Coalition at the time and I wish I had. I wish I had the support system and resources to get my family through this hard time. It has been almost 5 years and I still wonder what could have happened if my father hadn't gotten this awful disease, and if there was a cure.
I am getting married next month and his life wish was to walk me down the aisle, and he won't get to do that. No one can give that back to me, but knowing there are people out there fighting for this cause so someone else's father can walk them down the aisle gives me hope.
Thank you for what you do.
The Multiple System Atrophy Coalition has been a saving grace since the beginning. My mother, my hero, was diagnosed with MSA in late 2012. She fought hard and with determination to spread awareness about this rare and unknown disease. Sadly my mother lost her battle on Dec. 30th, 2016. Now I continue her fight. All along the way the MSA Coalition provided critical information, support, guidance, information, and friendship. My family has felt immense love from this whole team, all volunteers. The Coalition not only pushes the need for research funding, but provides an invaluable community for patients, caregivers, and loved ones. They offer hope to all, including family and friends of MSA patients who want to DO SOMETHING. The Coalition encourages fundraising and opportunities to raise awareness, get the word out there. My goal is to become and MSA Coalition board member when the timing is great. Thank you to Pam, Cyndi, Don, Carol, Judy, Vera, and the rest of this incredible team. You made the unbearable just a bit easier. RIP to my beautiful and courageous mom, Deborah.
We are so appreciative of Vera James, Pam Bower, Carol Langer, Gary Rose and all the wonderful volunteers in the MSA Coalition. They truly have been a lifeline since my husband Bill was diagnosed in 2011. The conferences and videos of the conferences have provided excellent information. Thank you for all you do for patients, caregivers and health professionals.
Our family's story began in 2001 when my dad first complained of a "shhh," ing sound in his ears. Within one year he was not able to walk straight, as if he were drunk. Within 3 years, he was in a wheelchair because he would pass out upon standing up. Our first doctor was a neurologist who told us he had cerebellar ataxia but gave no indication of what this stemmed from. After an MRI showed us an atrophied cerebellum, we found a doctor at the UC Davis Medical Center who specialized in MSA. There was relief in a diagnosis but terror at the outcome of this devastating disease. My father passed away 8 years later, bed-ridden, unable to speak, eat or move voluntarily. The disease paralyzed his body, with the exception of unwanted tremors, yet his mind remained intact. He understood what was happening to him but could do nothing about it. He cried at sad commercials and laughed at the funny ones, almost uncontrollably. It felt good to hear him laugh but when he cried, we all cried. I want to remember the good times we had but his accelerated progression toward death will haunt me, forever.
The MSA coalition is the only organization taking this disease seriously as it is comprised of patients, caregivers, relatives of deceased patients, scientists in the field and doctors.
Four years ago my dad was diagnosed with MSA-C. We didn't know much at all about this disease. We googled it. The information that we came across was so different and confusing. As a family we became my dads caregivers. About two years ago we found the MSA coalition and they have been an among support and information place. We lost my dad in the summer or 2016. Everyone apart of this coalition has been amazing. I am so happy that I have found this coalition and plan on helping others like my family has been.
WE NEED YOUR HELP to Defeat Multiple System Atrophy!
Our story began in 2008 with odd symptoms when my husband Mark thought he was walking funny in his boots & wanted a different pair to see if itwould help....it didn't. Then on a motorcycle run he nearly lost control of his bike going around a corner. Knowing something was wrong, we started seeing doctors. Doctor after doctor, test after test we were told there was nothing wrong. Finally, after being very persistant for an answer we got a diagnosis of Cerebellum Ataxia. Knowing we could live with that we would just have to adjust our lives to handle the condition.
Then he started developing new symptoms. He became very dizzy, had double and blurred vision, digestion problems, swallowing problems, dysfunctional bladder and then ended up with a permanent Foley catheter. He lost his ability to walk, talk, write & had constant headaches. Pain in his legs all the time on a daily basis with severe edema!
Low blood pressure that was hard to regulate causing him to nearly pass out upon standing, then severely high blood pressure, difficulty breathing, severe Sleep Apnea causing him to stop breathing 19-24 times an hour and the list goes on and on.
Finally his doctor said there was something else going on so we continued with more tests!! Then they found the answer in his brain scan. The doctor explained to us the Cerebellum in the brain should be thick & dense, about the size of a large grapefruit, but the scan revealed his to be shrunk down to the size of a 50 cent piece!! His body filled the empty space in his head with spinal fluid making his head feel sloshy all the time. He couldn’t handle sudden movements at all, turn his head or his eyes without feeling sick & dizzy. He had MSA, Multiple System Atrophy, a cruel neuro degenerative progressive disease with NO CURE!!! We wanted a second opinion so we went to Mayo Clinic in Rochester MN. After 2 long days of nonstop tests we got the same answer… MSA!!!
In the spring of 2013 our whole world came crashing down with this diagnosis!!!
We were devastated!!
My husband was a strong man with his whole life ahead of him yet he lost everything, his hopes, his dreams & his dignity. He was completely dependent on me.
I cared for him every day 24/7 until October 18th, 2016 when he made his final home in Heaven.
We need answers about how to find this earlier and understand it so we can know how to treat it and STOP THIS DISEASE or at least know how to control it!!
I miss my husband so much....
He was only 59 when this disease took his life!!!
There were 2 things this disease could NOT take from my husband....
his humor & the love he had for me & his family!!!
The MSA Coalition has been a great help to us...they are always there to help & to connect us with the help we needed in any way.
We need a cure for for this horible disease....Multiple System Atrophy is a Ruthless Monster!!!!
My husband was only 59 when this disease took him. He had many more years ahead of him to enjoy his life....now there are just memories & heartache....
PLEASE HELP FIND A CURE!
In loving memory....
Mark James Hungerford
January 17, 1957 - October 18, 2016
My father passed away from MSA in June 2016. I didn't become aware of the multiple system atrophy coalition until a little later but found them to be a valuable tool of information on this rare disease. It is also nice to have an MSA community for general support, as so little is known about this illness and a cure is desperately needed. Although my father was brace and accepted his illness, watching my him struggle with this illness was the hardest thing I have experienced. Multiple system atrophy coalition keeps me in the loop of any of the latest research developments and general information of MSA
I have been privileged to be a part of this organization for almost 19 years - I first became aware of them when my husband was diagnosed with MSA and attended a conference in Cleveland, OH. Since then I have not only attended many other conferences, I have joined the board of directors. It is an honor to be able to help others through this wretched illness, and to "pay forward" the help I received along the way.
My mom Connie Lopez lost her battle to Multiple System Atrophy in Las Vegas, NV November 2012 at the age of 59. She was diagnosed finally in late 2010 at Stanford University after showing symptoms four years before that. The Multiple System Atrophy Coalition is amazing, the people you get to meet all around the world is sad, but amazing at the same time. A horrible disease has brought so many people together to fight for a cure for a disease that we have learned so much about over the last 10 years. However, there still isn't a cure so we need to continue the Fight..xoxo
My mom unfortunately passed in 2015 at the age of 65 from this horrible disease. When my mom was diagnosed my family had no idea what MSA was or how to treat it. The MSA Coalition has a weath of information that I could not find anywhere else online and helped me to understand the different stages of the disease. I pray to be able to see the day a cure is found and pray for anyone that has be diagnosed with MSA.
When my brother was diagnosed with MSA in 2013, our family found the MSA Coalition to be a most helpful resource for information, help, and support. The monthly webinars allowed us to share concerns and ask questions of others in our situation. Tha MSA staff was only a phone call or an email away.
As I've come to know the MSA Coalition board members and other fellow MSA Warriors affiliated with this group, I've found a unique family. My brother is now gone, but the relationship I have with the MSA Coalition will not end. I've seen awareness, funding of research, and support for MSA patients thrive in the short time I have been associated with the Coalition, through their tireless and selfless work in promoting awareness of this awful disease. God bless the MSA Coalition in all they do!!!
My husband was diagnosed with MSA. The MSA Coalition was the first group that I reached out to. Someone called me immediately to talk me through the shock of what was coming down the pike.
I kept in touch with them, and called them to let them know when my husband died.
I hope that more money will be allocated to this disease, that is so unknown, to help those who are afflicted.
I really appreciated the support the MSA Coalition gave my family.
The MSA Coalition should be held as the standard of what a charity should be. Their total dedication to the MSA community is evident from their support services for those afflicted with this terrible disease to their fundraising and awareness support. I cannot speak highly enough about this organization or the people behind it.
When I was diagnosed with MSA I received a brief explanation and "Honey I am so sorry", that is a Southern thing, with the final comment, "Do the things you have always wanted to do, go have fun".
I read as much as I could about MSA and then some more. I was missing something. I needed to talk with people that had this disease, I needed help to understand it and I thought a support group would be helpful. I contacted the MSA Coalition. They helped me more than I could hope for and expected. I did get the help I needed with the support group and the the Coalition staff gave me their assistance. They are a terrific staff and very considerate of our needs.
I have been involved in three fundraisers so far for the Coalition to help raise money for research. I will continue to help as often as I can. I feel I am not only helping me but I am helping the staff that helped me better understand my Illness.
MSA Coalition is an amazing organization that raises awareness and provides much needed support and resources for this Neuro degenerative disease.
I wish everyone with a rare disease was as fortunate as I to have a non-profit organization like the Multiple System Atrophy Coalition for support. I have benefitted tremendously by my involvement in the annual MSA conference where crucial, up-to-date information is shared. I have met many wonderful people there who have shared ideas, laughter and tears. It is comforting to connect with other in the same circumstances who understand the difficulties of this disease. The MSA Coalition’s assistance has been indispensable in planning a fundraiser to support medical research. I truly appreciate that 75% of the money raised for the MSA Coalition goes to research; what we all want most of all is a cure for this disease. It is so comforting to know that there is one place for support, advocacy, research, and education.
MSA is so rare, most medical practitioners have never heard of it. The MSA Coalition provides personal and online information that I use regularly. Even our neurologist (who specializes in movement disorders and particularly atypical Parkinson's Disease) does not have information that is available through the Coalition. But it's the caring that exudes from this group that makes it special
After being diagnosed with MSA in 2008, the MSA Coalition became invaluable to my family and me. The group's web presence (lots of helpful info and links to key resources), plus their personally engaged volunteer support network are amazing. Each year, the group's breadth and depth has expanded and they now invest $500,000 in up to ten research grants to high-potential applicants. All this, with an all volunteer board that doubles as staff! This is a GREAT non-profit!
Selbst an MSA erkrankt, bin ich Pam Bower und der MSA Coalition sehr dankbar für die bereits geleistete internationale Aufklärungsarbeit und die gelungene Bündelung der wissenschaftlichen Bemühungen um diese seltene Krankheit.
Multiple System Atrophy (MSA) is a rare Orphan neuro-degenerative disease. Orphan diseases such as MSA are disenfranchised from drug development in the Pharmaceutical industry since investments in rare diseases do not yield returns. MSA is rapidly progressive within a few years and currently has no effective treatments nor any cure. This is where the work of the MSA coalition comes into picture. Since 2014 , MSA coalition has supported 17 projects with 600,000 being spent from funds. Just last year MSA coalition managed to raise $174,074 through Crowdrise's Giving Tower holiday Challenge. MSA coalition holds an active support community of passionate , active volunteers and employees and also held a conference last year for caregivers of MSA. I am hopeful and optimistic that with the passion and grit that all of the members of the coalition , that an effective treatment would be found within coming years through active research , and hopefully a cure in one day as well so families and patients no longer suffer from this cruel disease! :)
The Multiple System Atrophy Coalition is instrumental in our lives in helping us face my illness knowledgeably, with necessary support and information. We have participated in the online forum, the various web page opportunities, the Facebook locations and in-person meetings and conferences. These opportunities have been greatly helpful, as have the organizers, contacts and the many caring people we have met and correspond with. We are much in their debt as our friends and confidants as we fight a debilitating disease which attacks the neurons in my brain, causing mobility and tremor issues, along with many bodily functions of a vital nature. This group has educated us and encouraged us. We have been shown kindness, generosity and caring, while developing deep friendships. Dr. Greg Wenning has been helpful to all patients and caregivers, providing answers to questions online and leadership in determining areas of research that would find solutions to unlock the mysteries of the causes of this grave disease. Several others, including Pam Bower, Vera James, Robin Riddle and Gary Rose have each been so helpful and dedicated, in particular. We are unable to name all the friends-- patients and caregivers-- who have impacted our lives similarly. We are appreciative and believe this is the best nonprofit group available for brain diseases and that it should be recognized accordingly.
My mother has MSA. The MSA Coalition has been there for us any time we need support or guidance. They're quick to respond and kind. The website is our go-to resource for accurate information.
The MSA Coalition are active in raising awareness, funds, supporting research. They also provide a great many services - as I am in Australia I access their online information through facebook and yahoo support groups. They also have many resources listed on their site. Pam Bower works tirelessly on behalf of the organisation.
When my sister was first diagnosed I discovered the MSA Coalition. The information provided has been a great help.
When my husband was diagnosed with MSA, the Multiple System Atrophy Coalition was the first organization I reached out to. They have a hotline, and I got immediate support and feedback. They had a DVD on the disease, which they sent me. I even passed it on to my husband's specialist.
I continue to be connected to them even though my husband passed away from this horrible disease. They are working to make a difference for an under-recognized illness.
I have used the MSA Coalition and their support since finding out about my Mother's MSA. Pam and the team has been instrumental in getting information out to patients and raising awareness for MSA.
I got diagnosed with MSA in December 2013 and of course I knew nothing about MSA. Thanks to MSA Coalition I would say that I am a very informed patient and I am kept informed and updated on research and other patients(which is sometimes very sad). Without MSA Coalition I would have to do a lot of research myself
My husband was diagnosed in 2012. At that time the Dr. from Mayo Clinic in jacksonville, Fl. told us to go home and google MSA and find a local Dr., and go from there. The shock of finding the specifics of this horrendous disease was mind boggling. Thankfully in searching the web we found this coalition. It has helped us immensely, and we feel that we are not alone in our battle.
We deeply appreciate the MSA Coalition for their support of patients and caregivers. It was life changing to go to their annual conference and meet others who are living with MSA. Their website hosts a number of educational resources. Coalition Facebook pages link the patient and caregiver communities around the world. Money raised for research is critical as the US government funds nothing. MSA Coalition activities are effectively run by an all-volunteer board. We are impressed with their work!