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!
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.
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
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.
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 .
MSA Coalition Emeritus
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 first had contact with Pam Bower and Shy-Drager/MSA support about 14 years ago when there was nowhere else to turn. Their support was crucial to my wife's quality of life and emotional well being. Although she passed away in 2004 I am thankful every day for the work the MSA Coalition continues to do and the research it sponsors.
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.
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.
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.
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.
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.
It started six years ago when my brother became ill with Multiple System Atrophy. Wow! Was I blown away. Although I had years of medical training under my belt; I had never heard of this disease nor the Multiple System Atrophy Coalition.
It didn't take long at all to find web sites about the Coalition and several pages for support groups and help. I sure did need it. With this wonderful nonprofit coalition, I was able to learn and eventually help my brother's doctors and Hospices have more information about this terrible disease. My brother made it for seven years. He passed 03/24/2014. Today, I still continue to be a part of this organization, helping to ease their fear and lead them to the MSA Coalition and different support sites. I couldn't have made it without this important organization. Below is a photo of my brother
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!
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.
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.
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.
My husband Charles Ganzert had a long battle with Multiple System Atrophy. He was diagnosed at the University of Michigan and they referred me to the Multiple System Atrophy Coalition for further information and support. The Coalition was an invaluable resource for information about this rare disease. They provide a website, phone support, and several online groups for patients, caregivers, family members, and ,finally , for widows and widowers. These groups introduced me to many people who were walking the same walk and could understand and truly help us survive this journey. Thank you to the wonderful staff and volunteers of the MSA Coalition!
My husband Chuck was diagnosed with Multiple System Atrophy three years ago this month. We received only bits of information from our neurology/movement specialist so we have relied on the Coalition as a source of information, resource for finding help, and a lifeline of support from other patients and carers through online support supplied by the Coalition! Thank you for all you do every day!
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!