The Defeat MSA Alliance has done a remarkable job in bringing together patients, caregivers, scientists, and sponsors of clinical trials in an effort to bring awareness and drive progress towards finding a treatment for Multiple System Atrophy. I have also been impressed at the international presence and this organizations established network with the scientific leaders in the field.
Defeat MSA was such a wonderful resource while my mom was fighting MSA, strictly run by volunteers who all have been touched or cared for someone with this dreadful disease. There was always someone there to answer a question or offer a resource, which was so very helpful when you are caring for someone with such a rare disease. Defeat MSA Alliance definitely fights, speaks & advocates for those who can’t.
This is an amazing charity who has always had a mission to Defeat MSA! All board remembers are volunteers and have a personal connection which makes them a very strong charity in helping the MSA community
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Defeat MSA Alliance is a great organization that raises awareness and promote understanding about Multiple System Atrophy.
We love Defeat MSA and their tireless work in educating people with MSA and the community around to help support them in this very difficult diagnosis. Our patients have so few places to turn for information and it's always wonderful to be able to point them to this one. Phil and team are so personally involved and caring. We appreciate their work!
Defeat MSA Alliance serves as a wonderful tool for the community of MSA. As a neurologist I encourage patients and family members to visit the website
Defeat Multiple System Atrophy is an organization that provides support to patients, families and informs health professionals for greater knowledge of this disease that helps both early identification to provide a better quality of life to patients; as well as promoting support in society to obtain funds to continue researching future treatments and/or relieving symptoms.
Defeat MSA Alliance is an organization that makes multiple system atrophy visible, helps inform doctors, caregivers and patients about the disease, creates spaces to share experiences and exchange ideas between different countries, and supports research that contributes to improving the treatment of symptoms. and have a better quality of life. Thank you Defeat MSA Alliance.
Defeat MSA Alliance is an organization that has really been promoting the topic of multiple system atrophy (MSA) for many years and is dedicated to spreading knowledge about this disease. It invites leading experts in the field of MSA to raise awareness of the problem in a large number of countries in different languages which is unprecedented. It also provides substantial support for patients with this disease and their families. Thanks to the activities of the Defeat MSA Alliance, MSA has really gained more public attention.
Defeat MSA goes above and beyond to assist patients, caregivers etc. dealing with MSA. I am grateful for this organization who helped me during a time when I had no idea where to turn. Defeat MSA is committed to spreading the word on a local, national and international level while funding raising in hopes of finding a cure.
What an outstanding organization and resource for those that get this disease. The entire organization is dedicated to finding a cure for MSA and is one of the best run that I have ever been engaged with.
Defeat MSA is the best. Why do I say this with such strong affirmation? There isn't enough space on this page to list each reason, so I will highlight from my own experience.
When my brother was diagnosed with MSA/P in 2007, with all my years of experience in the health industry; I had never heard of this disease.
I felt mentally dizzy as every direction I turned to for advice, explanations and help, I received little to nothing. It was a woman named Vera James, who turned my head to Defeat MSA. I was overwhelmed at the caring attitudes, the helping voices, that guided me through the seven years my brother suffered from this beastly disease. I felt the feeling of standing alone in a desert, was gone and I had just inherited a vast amount of friendships from all over the world.
Unfortunately, my brother lost his battle in 2014, and yes, my own life was forced to move on without him, but I couldn't move on without joining the fight to find a cure.
The support you may need is right at your fingertips. There are awareness activities always somewhere close to your area.
There is a strong board of members willing to do more than expected. There are awards for work that was over the top. Volunteers from all over the map say in itself how strong and committed this group is.
If you learn that a friend or family member now has this diagnosis, it is normal to feel alone and scared but with the understanding and commitment from the Volunteers, scientists and doctors; you can reach your hands up and Defeat MSA will do everything possible to help you and to continue our fight for a cure.
Thanks for letting me share with you,
Terry Shepherd
I love the resources provided by this charity. I found the clinical trial GDNF which I am a current client in. I'm a 2 book author donating 10% of the proceeds to. Constantly have fundraisers to give back to this wonderful charity. My co-host and I create awareness with our podcast MSA Crusaders. #MSAawareness
Defeat MSA is such a wonderful organization to be a part of, and to be supported by. After my grandma was diagnosed, Defeat MSA was a crucial part in assisting us with learning as much as possible about this disease, and along the way we gained such a wonderful support system. Since her passing, we keep pushing forward alongside the wonderful people apart of Defeat MSA to spread awareness about this disease to help others in the future.
Defeat MSA was so very helpful & supportive to my mom & our family. Battling a rare disease can make you feel like you are on your own island … defeat msa was a wealth of information for both the patient & their caregivers. Sadly my mom passed in December 2023 from this terrible disease… our family will continue to fight for those who can’t
Defeat MSA is such a great resource of information and bringing awareness to a terrible disease that is often misdiagnosed. Through awareness they can bring information to care givers as well as families affected by this disease.
Defeat MSA was a great outlet for my family when my grandma got diagnosed with this terrible disease. They provided information and resources to help in her battle. Even since her passing we have continued to be involved with them because they are an awesome organization!
I received support to publish an article in a major nursing journal to help raise awareness of Multiple System Atrophy among nurse practitioners.
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They make people aware by this traveling shoe they have. My wife posed with it.
I am glad they are trying to help make people aware. It was on a billboard I know and different celbes take photos with it.
They support research and our working with many other charities to support research.
If not a cure, we need to stop the disease and develop more treatments now!
I was really worried when I received my diagnosis. They have a free support line run by people that have experience with MSA. It was nice to talk to someone that really knew what MSA was . It was just over the phone but it helped.
Defeat MSA has real working partnerships with other organizations with similar issues.
A lot of people claim to have partnerships. But the alliance conducts a conference with other charities to benefit the community and it is all free of charge.
Defeat MSA is the ONLY organization in the USA that supports a closet for MSA patients.
Others won't support it because of the "liability" and risks. Defeat MSA puts their action behind their support mission. They give more than lip service.
Every year Defeat MSA Alliance has a conference that has speakers provide information about MSA in many different languages. I believe they have the biggest conference ever done about MSA. Also, they are complete run by volunteers, whereas other charities have pay huge salaries. One wonders how much really gets to the cause.
The Defeat MSA Alliance is an invaluable source for networking and sharing experiences that help patients and caregivers cope with MSA.
I am particularly grateful for the Defeat MSA Alliance’s Loaner Closet Program. The program connected me with a power wheelchair and it's donor, who has become a mentor and friend.
Although our time as patients is a relatively short time, our caregivers' experiential "tricks-of-the-trade" live on well after our spark is gone and bring that valuable experience here to share.
I’ve been a part of defeat Msa alliance for over four years now. And I am very proud of the hard work that everyone does as Volunteers. . The alliances has come along way in a short amount of time and we will not give up. We are all doing our best To work for a cure.
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My brother Mike Smith is living with MSA and through all this we learned about Defeat MSA.
We have volunteered, to help this grow and now we are a part of Defeat MSA. It's a rear disease, Most Doctors will never see any one with MSA. But we are trying and getting it out there and 100% of our donation go to research. There is no cure or medical help. Defeat MSA will not give up in trying to find a cure and that is what make this a great noprofit.
Defeat MSA Alliance supported us logistically, financially, emotionally, and spiritually by providing literature, providing the start/finish line banner, the Shoe, the insurance, and personally working with us to make our 'Ride Around the Bay to Defeat MSA' possible. We were able to help raise awareness about MSA thanks to Phil and Defeat MSA Alliance. I hope the video described what NSA is and what it' feels like to have it.
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When you are dealing with a disease of such rarity hat most Doctors have never heard of it, you need all the help you can. MSA Alliance has been my primary source for information on diagnosis, prognosis and current research & treatment for MSA.
The flip side of the equation is the Alliance community which offers hands-on advice ( born from adversity and experience ) on how to educate your health providers, which medications worked for them, what equipment and techniques work best as the syndrome progresses, and from the heart, endless emotional support, for both the patients and the caregivers.
As I share my wife's journey, I can't imagine how much harder it would be on us without them.
my thanks, and gratitude ........Jack Murphy
My husband was finally daignosed with MSA in 2020 after 5 years of going to numerous doctors and having a multitude of tests run. This organization has been my bedrock over this last year. We've been able to connect with others who generously passed durable equipment on for my husband's use. Everyone is supportive, sharing life experiences, a d offering encouraging words whenever possible. ❤️
This group is meant to educate and make people aware of a very rare ,rapid progressive neurological disorder that impairs the basic bodily functions that people take for granted everyday. Life expectancy is 5-10 years. I plan on beating those numbers. There is no treatment and no cure for MSA. AWARENESS = FUNDING = RESEARCH = A CURE i was diagnosed in 2019 , joined the board of directors in 2020. i don't plan on taking my diagnosis lying down, Hopefully in my lifetime we can find a cure or at the very least slow this monster down.
MSA is a very rare disease that most doctors don't even know about. It is progressive and there is no treatment or cure. When my husband was diagnosed, we turned to this group for education and support. I particularly appreciate the support as a caregiver. Very few understand how devastating a diagnosis this and having others give advice and comfort is so important. I am also impressed with the research they are doing as well. All in all, this is an amazing non profit. I have worked for non profits for years and this one is so important and the best!!
My husband was diagnosed in 2018. Once I knew the diagnosis I immediately turned to find out all that I could about this horrible disease. Defeat MSA Alliance provided me so such information about the disease and a community to turn to for questions and support! I was able to ask all sorts of questions and compare what was happening to my husband. We were able to use the information to make more informed decisions about his care throughout the entire time he was suffering from the disease. This disease has similarities to ALS abut instead of a muscle atrophy it’s the brain that is atrophying. His dignity was gone. He began to also have cognitive issues. He would zone out and not recognize what I was talking about. He couldn’t walk well and used a walker. He was constantly in the bathroom. A drive to the doctor that should take a half hour turns into an hour due to all the stops to go to the bathroom. It was horrible. Step by step my husband was slowly changing and dying in front of my eyes. He was actually one of the “lucky” ones as he died suddenly before he had to get wheelchair and bed bound and without all the tubes and things that he would have needed to keep going until his death.
Research is the biggest thing that is needed currently. With this being such a rare disease, those of us who are in the thick of dealing with the disease need answers to why it happens and more importantly ways to slow it down or stop it in its tracks. It’s such an insidious disease and immensely devastating for the entire family.
This group has made me aware of what might occur to me. Said that I find it a good way to share different ideas that may help with our many symptoms.
Since we all have the same disease, you get support from those who understand what you’re going through..
No one really understands I unless they have the disease.
It also keeps us abreast of the latest clinical trials and research being done.
This disease,has only 100,000 people diagnosed with it per year. That is why there is little funding, which is so necessary for a disease that has been around since the 60’s.
For we who have, we are filled with sadness for what we’ve lost and what are future holds. We know that with few diagnosis per year our funding is slim.
Tell that there is no cure or very little care that helps to has this disease and look how they look this the future. We need help.
My husband is only 49 and has been diagnosed with MSA-C since 2020. I am forever grateful for the knowledge and thoughtfulness of this group. I am not sure how we would manage without getting information from the Defeat MSA group . It’s a battle every single day. We need all the help we can get with this disease.
I have a very rare disease and I have never met anyone with the same disease and I'm not likely to. In that way it is a very isolating illness. It is only through organisations like Defeat MSA Alliance that I can connect with others who have the same disease or have cared for someone with MSA. Also, because it is so rare, it does not attract as much funding as cancer or better known illnesses. Defeat MSA Alliance is doing their best to address that issue.
Excellent advise and knowledge sharing, more research needs to be done and this non profit is at the forefront to push for change in awareness. It is incredibly helpful for the affected as well as their families.
When diagnosed with a rare disease, there seems to be so much to learn and you feel so isolated. If it were not for Defeat MSA Alliance, I would be lost. The organization has helped me so much! They are a life saver and a great resource! You can contact anyone there for help and answers and support. They are the best!
very committed group of volunteers dedicated to supporting patients and families with MSA. I have helped them review some innovative research proposals for new treatments for this devastating disease. The staff is very responsive to phone queries and have a wide social media presence helping families across the globe. The charity has a loaner closet with special equipment specific to the needs of MSA patients. They recently sponsored a major global research meeting for MSA. I have followed this charity since its inception in 2013 and every year I see them developing bigger and better initiatives.
I emailed Defeat MSA Alliance for help for my husband who has MSA. They have a program to help people with equipment. I am caring for my husband and he is too heavy for me move. He cant use his legs anymore. Defeat MSA helped us get both a wheelchair & a hoyer (which is a kind of lift). I am very grateful for these people. No way I could manage this long without them. I did a fundraiser on my birthday on Facebook because I wanted to support their work.
I am a neurologist in Arizona, I have treated some MSA patients. I connected with this organization through the American Academy of Neurology (AAN). I have spanish speaking patients. They have provided me patient information in Spanish. They also run video chat support groups with a downloadable app for patients and caregivers. I do believe two of my patients are in a group.
I cannot say enough great things about this organization. It is a very difficult disease. They are involved research, education, support for pts and awareness events.
My doctor told me I may have shy drager disease back in November. He retired and I was supposed to go in for other tests to confirm it. For now ever months, I have not been able to find a doctor. Every doctor that I go to has no idea or never even heard of it.
I called this organization. They called be right back and helped me find a doctor that knows the disease. I went to him and unfortunately, he told me that he agrees with the first guy. So I guess I have it. The new name of it is called multiple system atrophy or MSA. At least I know what I got. I joined a support group with Defeat MSA. I can say that friends help...having friends with the same disease helps - it gives me hope and I am also in a new drug trial. I recommend getting in touch with these people at the Alliance if you get this disease.
I learn about Defeat MSA when I was searching for answers. I call their toll free line and spoke to a lady. She was very helpful with information about a drug trial that we are now in. So I am thankful for the information. Also, their co-director is a neurologist with a family connect to the same disease.
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I have supported Defeat MSA in the past. They are all volunteers and have no paid staff at all . Most importantly, they are personally connected to MSA. My nephew died of it. I know the organization's founder had a brother die of MSA. Having people in a group with a biological connection is very important to me. With a lot of other charities, the people running the organization have no connection to the disease or charity.
Although having had a nursing career spanning four decades, I had never heard of MSA until given this diagnosis in May 2018. Even now, I have yet to meet a person, face-to-face, who has this diagnosis.
"Defeat MSA" has become my lifeline, providing CONNECTIONS to help maneuver this rare disorder - connections to the loaner closet for medical equipment, connections enabling me to participate in a teleconference with neurologists attending a professional convention, connections to participate in a clinical trial for an MSA drug treatment, and connections with numerous MSA resources around the globe. Most importantly, social media connections, via "Defeat MSA", have helped me tap into MSA patients around the world who have become a wealth of information, as well as, my cherished MSA family.
Without these valuable connections, MSA would be a long, lonely, terrifying journey. Thank you, "Defeat MSA"!
I was Diagnosed with MSA-C,Dec.17th 2016. I had a medical background but never heard of MSA. I did my research and tried to gain as much knowledge as I could. I reached out to several people, all people posting on MSA sites. Defeat MSA was a place that I felt so comfortable expressing my fears, my bewilderment and being accepted. Phil responds immediately to me questions and offered suggestions as to where I need to go if I have questions that he cannot answer. Though honestly Phil has most answers as his brother pasted with MSA and Phil was his personal caregiver. When his brother passed, Phil made it his live long purpose to help patients, family members and caregivers not only with comfort but to do everything within his power to help fine a possible cure. It did not happen for his brother, as his brother’s progression was very quick. I have had the great honor to speak with Phil several times, he is the most generous caring individual I have had the honor to know. His non profit extends beyond just the Disease. He is going world wide so other people who have no help or a place to share their journey , Phil is opening up the door for them so they are not alone. He also has a loaner closet of special medical equipment that is on loan to any MSA patient who may not have the funds to purchase or inadequate insurance coverage. He also has the MSA shoe that again has traveled the world bringing awareness of MSA. Phil also has the MSA hub where any one can sign up for. That informs you of upcoming seminars, discussions groups etc. I feel that Phil takes a special interest in all of us. We have become like family. For me I know I can turn to him morning, noon and night. For a patient who is dealing with this horrific disease, I cannot think of a greater act of kindness or generosity then Phil Fortier gives us.
I have been diagnosed since 2015 with MSA. I had never heard of MSA before, I was a sponge for information and was determined to find a cure, This website and a hands on developer helped with both goals. I haven’t found that cure yet but I know that every penny raised by this website goes to my cause and one day the funded researchers will find a cure
The developer works tirelessly to make life better for the MSA patient. He developed a global hub where I have met wonderful friends from all over the World. Most of the people I have met have MSA and. it is great to ask them questions about medication or what’s going on in their area of the world Ive learned about current research and relative trials and best of all I have made friends that understand what I am going through, I am not so lonely.
The developer also hosts the MSA loaner closet and I borrowed a u-step walker which is brilliant. I had already invested in a plain walker and strollator which can both fall over with me. I was not comfortable forking out a small fortune for a top of the line walker so I found out I could borrow it from the loaner closet and I will only need it for a year or two, it’s great. I am so glad I found Defeat MSA and the developer Philip. Because Philip’s brother died of MSA, he seems to be really driven and to care.
This charity does the best job of all MSA charities of actually being there to truly help research and further studies toward a cure than other MSA charities. They are there on a personal level for patients, caregivers, and families who have loss loved ones to this horrible disease. They do better at getting money to research and studies than using money for charity expenses. That led me after 13 year battle with MSA to join in this year to help as patient advocate
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Being a patient with MSA for 11 years now they welcomed me with open arms. They care about about each individual and their family from the loaner closet, the HUB, MSA shoe, life affirmations, groups for families who have lost loved ones to this dreaded disease working toward common goal of finding a cure. They make everyone’s story important. Recently adding me as a patient advocate was such an honor
Defeat MSA does a wonderful job of making people aware of this horrible disease. So many people do not know what MSA is. Defeat MSA not only offers education, but also heart felt support. They stay on top of any new medical information and tirelessly work with the medical community. I’m so grateful for this organization and all the hard work they’re doing.
Defeat MSA is the only nonprofit we found to provide support and education as well being the only loaner closet in North America, provided a Barton chair that makes it possible to easily transport Mom from having to lie in bed to a sit up position. It's efforts to raise awareness and proper diagnosis with the public as well as the medical profession, including doctors is astounding. Defeat MSA does it all. Being all volunteer and seeing what has been accomplished since its inception is nothing short of miraculous. It's also gone global. Being nontechy myself, I don't totally get how but the numbers of those able to be supported and educated has exponentially increased daily by this genius move. I cannot say enough about the integrity of this organization and all it has done for those suffering from this dreadful disease and their family members. God bless you all for all you do. We are all in for DEFEAT MSA!!!
Defeat MSA works tirelessly to help those afflicted with this terrible disease. They provide resources, support and education to families, caregivers and patients. Defeat MSA is dedicated to DEFEATING MSA.
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Defeat MSA has assisted patients and families with this fatal disease. They've played a critical part in educating health care/medical professionals. MSA continues to strive to raise a greater public awareness for this disease. The MSA community is better for having an organization such as Defeat MSA advocating for them.
While witnessing a loved one lose a parent to this viscous disease, I learned about this great organization. DefeatMSA has great resources for patient support and they helped the family out in countless ways. They are an amazing organization with a great mission.
I love knowing that all funds donated are used to help find a cure for MSA since all work done is done by volunteers (most, if not all, who have been impacted personally by this devastating disease).
I first learned about MSA from a friend whose husband died from this terrible disease. Each year during the month of his birthday, she has started an "Eat Cake for Breakfast" tradition to honor him and to raise awareness of MSA. Many donations are made to defeat MSA, to fund research and public awareness. It has been a blessing to all of us!
We have a very good friend who lost her husband to MSA and have become involved in the fight and fundraising to help bring a cure to this terrible disease.
DefeatMSA is an amazing organization. They put MSA patients at the forefront of every program, project and decision. Run by a small group of dedicated volunteers!
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My husband passed away 5 years ago from the devastating disease MSA. Since that time I have become familiar with Defeat MSA and the important work they do. They run the only loaner closet for MSA patients and they have created a wonderful online tool to connect patients who would otherwise have no access to support groups. Great work, great charity!
This organization is comprised of many passionate, hard-working people who are making a real difference in raising awareness of MSA.
As we struggle every day searching and hoping for a cure or for something to just get better, we must always stay strong and this organization provides hope to all those with MSA. This organization took its time to come to my home and see my father and speak to him, and not only be there for us, but works every day to do their best to fight this disease for all who have it.
Defeat MSA has brought hope and comfort to many who struggle with this disease. They are a critical organization in terms of connecting people, raising awareness about MSA, and advocating for research funding.
Great place for support! We cant thank you enough for everything that you do.
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I am connected to this charity as a general member of the public. I knew nothing about this strange disease - never heard of it at all. But one of my friends was diagnosed with it and since then, I have learned a lot of them. One of the leaders of the charity is a brain doctor. None of them are paid for their work - they are all volunteers, and they are constantly working to help people suffering with this disease. They invented a mobile app to help support people all over the world with this disease. They raise money for research. I know where donations are going - directly to help people with the disease and their families with support programs. I hope they continue to reach more and more people.
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Defeat MSA has raised a good deal of awareness about multiple system atrophy. They have taken on a role of helping to support patients too, through their support group too. I hope they continue to grow and develop into a successful charity. I am happy to contribute to them, because I know where the money will go, to a good cause!
Defeat msa is ran by volunteers all directly connected to multiple system atrophy, they have a loaner closet for people in need of different medical devices, they also have an online hub where people can chat live with others around the world, their website has alot of very helpful information and their new monthly newsletter is awesome.. This non profit is the best out there!!
DefeatMSA is very knowledgable about Multiple System Atrophy. They support the persons with and their significant others in this difficult disease with no yet known treatment or cure.
Great advocates for a worthy cause.
This nonprofit holds a place near and dear to my and my family’s hearts. Thank you for all you do, in the fight to find a cure for MSA
Defeat MSA has been a powerful voice in raising awareness. They were very involved with my uncle as
He battled MSA. Keep up the good fight!
Since Defeat MSA's (5013b) inception it has continued to set an exquisite precedent for nonprofits committed to spreading awareness about Multiple System Atrophy. During this time Defeat MSA has put in countless hours and time to create a global presence. Multiple System Atrophy is a debilitating Neurological disorder that isolates the warriors (patients) with MSA. I'm continuously in awe of the frequent consistent and thoroughly planned progress due to the strategic constant work by Defeat MSA.
Truly yours, Shauna Ruttan MA
We are thankful for Defeat MSA! It has worked hard to support people dealing with this disease. This year, they invented the first application for the phone. I have it on my mobile phone. MSA is what my nephew had, it killed him. Unlike many other charities, this organization is completely operated by volunteers and everyone in charge has an immediate family relationship to this horrible disease. It matters, because at least, I know that their motivations are in the right place. I know first hand, up close, the enormous suffering involved. I am praying for the day when we can defeat this forever!
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I have supported Defeat MSA in the past. They are all volunteers and have no paid staff at all . Most importantly, they are personally connected to MSA. My nephew died of it. I know the organization's founder had a brother die of MSA. Having people in a group with a biological connection is very important to me. With a lot of other charities, the people running the organization have no connection to the disease or charity.
My Uncle has been a patient with MSA for over a decade now. I've seen him be very engaged with organizations like Defeat MSA both to to help spread awareness and find meaning to keep him going in his own life. I believe that being engaged with Defeat MSA has helped keep my Uncle living for years beyond what the doctors told him and helped other people in need get connected with a valuable resource. MSA is a disease that doesn't get enough attention in the mainstream and I think Defeat MSA will help it to get the attention and funding it deserves to help people suffering with it.
This is an amazing organization! Such a friendly, kind, generous group that welcomes you with open arms.
I have been my wife’s care giver for many years now it has been a long hard battle. We spent many years trying to get a diagnosis and unfortunately finally get diagnosed with MSA. We then spent a long time not knowing much about the disease or anyone else with the MSA. That all changed when we found Kym. She opened the door to us to the Defeat MSA family of people and support as well as a wealth of information. I hope sometime soon that through the efforts of Defeat MSA and all they do we can soon say we have finally Defeated MSA.
I cannot thank Philip enough for starting this charity and working tirelessly to raise awareness about and supporting those afflicted with Multiple System Atrophy. My mom has met many other patients through Defeat MSA's support groups and we look forward to meeting and helping others cope with this awful disease.
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This wonderful charity has made my mom and I feel less alone as she battles this rare and devastating neurological disease. We have met many others who are fighting to understand and learning how to cope with this awful diagnosis. The support group meetings are so very helpful! Thank you Defeat MSA for spreading awareness and bringing patients and their families together! I look forward to the next fundraiser and patient outreach meetings!!
My husband was diagnosed in 2016 with probable MSA-C. He was orginally diagnosed with Sporatic Cerebellar Ataxia. Defeat MSA has the only Loaner Closet available for MSA patients to obtain medical equipment to help patients such as my husband. We were able to obtain a Hoyer Lift to assist my husband.
My beautiful Dad passed away from this Monster of a disease at the age 67 years old it was the most frustrating time to watch someone you love suffer the way he did and there is absolutely nothing you can do to help them. The work that Defeat MSA do is amazing. I am currently holding the shoe in Australia to help bring so much needed Awareness about MSA. Defeat MSA is an organisation that I have so much respect for and hopefully together we can one day find a cure for this CRUEL disease.
My mom was diagnosed with MSA-c in late 2009 and lost her battle nov. 2012. Defeat MSA and it’s board members all have a direct link to Multiple System Atrophy which to me is very important in a non profit. They also have the MSA shoe that travels the world helping to raise awareness. I am very thankful for defeat MSA and all the awareness it brings to this horrible disease. In memory of my mom, Connie Lopez
I was sick for 7 years before being diagnosed with MSA finally. It had now been 4 years since I was diagnosed. I search internet for groups and to gain knowledge about MSA and found this sight where fellow patients and care givers can communicate back and forth about what they are going through older patients help newly diagnosed patients understand and comfort each other. It has been a huge blessing too have this site People on here are great Nd people running make it a great sight that no one puts you down Everyone wants to help and console each other
Defeat MSA has been an integral part in helping our family cope with this terrible disease. With the help of Defeat MSA we look forward to advancing the knowledge of this disease.
Great group trying to bring awareness to MSA. Involving patients, healthcare professionals and caregivers, they provide support and education through focus groups, meetings and their website. A very dedicated group who have helped many people cope with this little known and debilitating disease.
This charity helps people afflicted with this debilitating disease through the use of shared equipment and of course the traveling shoe.
This non profit is doing stellar work in this field. They are raising awareness amongst the general public regarding a devastating neurological disorder with their MSA shoe (which has literally travelled the world and been a great ambassador for this cause!). The MSA closet that helps those who need access to certain equipment is a pretty unique concept too. Keep up the good work!
our efforts to increase awareness via the MSA shoe;
the patient support group - One of only three that are only focused on MSA in the country
our MSA equipment closet - The only one in North America
patient advocacy (we got March declared as msa Awareness Month here & helped in several states increase awareness
The MSA Loaner Closet is an amazing solution to help with the many equipment needs of those who suffer from MSA.
My husband received a donated electric wheelchair from another person with MSA who could no longer could use it.
It has completely enhanced his mobility and improved his quality of life. Insurance would not cover the equipment because we had already utilized our allotment, as this disease progresses so quickly.
I intend to donate the wheelchair back to the charity when we are finished with it.
Defeat MSA is an amazing organization striving to provide information and increase awareness of this debilitating disease. Through patient advocacy, support groups and possessing the only MSA equipment closet in North America, Defeat MSA is providing unparalleled benefits to those affected by MSA. Through their own experiences at the hands of MSA, the founders of this organization have converted the pain caused into positive action by being forces of change and enacting positive action to raise funding to support research and help those dealing with the consequences of MSA. Defeat MSA is truly making a difference for many people and I hope it will continue to thrive and ultimately succeed in defeating MSA.
I watched my lifelong best friend suffer from this debilitating disease for 6 years. Ultimately, he was trapped inside his body. His mind was perfect, yet his body started shutting down piece by piece until he was paralyzed, couldn't eat, speak, or any of the normal activities that we do. It was heartbreaking. This nonprofit is for the benefit of the patients, the caregivers, the families and the loved ones who all need such emotional support during this traumatic time. The group members are there for each other, to vent, to cry, to get angry, and to ask questions about things that are happening to the patient to help them cope. This cause has done so much for so many, the MSA Shoe is a wonderful mascot that travels the world to raise awareness for this little known disease. Many famous as well as not famous people have posed with the Shoe. The Loaner Closet is so amazing, people donate their medical equipment such as wheelchairs, shower chairs, etc. to other patients who can't afford to purchase them. This nonprofit is one of only three that are focused on MSA in the US. I have watched this grow into such a helping hand for those in need. Defeat MSA is the example of the true meaning of a great non profit and I truly hope that it is recognized as such.
Wonderful charity raising awareness world wide! The people who run this charity have real heart, commitment, and passion! Please help support a truly wonderful cause!
Defeat MSA is a very suppportive organization that helps in many ways. Our life has been taken over by this horrible and mostly unknown disease. So, as part of our MSA journey, we contacted Defeat MSA to become an MSA shoe Awareness Ambassador. We travelled Eastern Canada with the MSA shoe creating awareness and making memories!
We feel stronger as a family, by helping in our small way.
We can't find a cure for a disease, that no one knows about. First step is awareness, second step is a cure!
Thank you Defeat MSA for guiding us, supporting us, and allowing us the honour to carry the MSA shoe on our journey.
Steve and Beth Foster
I know about Defeat MSA because I have volunteered at fundraisers. A friend s brother died of the disease and this friend has been active in working with Defeat MSA to help families combating the disease. The purpose of Defeat MSA is to raise money for research and awareness. My husband suffers from a different rare and progressive neurological disease, so I understand how challenging it can be to explain an often changing situation to people. Polite inquirers generally just want to hear that there's a happy (or at least not wholly bleak) ending when they ask after an ill family member. Increasing awareness keeps families from feeling that they have to put on a false face of optimism. On the other hand, we can find genuine hope in Defeat MSA' s funding of research to eradicate or at least mitigate the condition.
This charity has done much to raise awareness of this rare disease. It has also provided support for my mother in law and our family as we learn how to cope with the challenges that M.S.A. presents. Without Defeat M.S.A., dealing with the day to day problems (equipment needs, resource sharing, etc.) would be an enormous burden. Thanks to their support, we are able to focus more on the emotional support of our loved one dealing with this terrible disease.
Great cause! As a neurologist, I have personally seen pts suffer from this tragic illness and struggling for support systems. I wish them all the luck and offer my services in any and which way needed.
This organization is really making a difference in the lives of MSA patients. They have support groups, knowledgeable, experienced staff and share equipment that MSA patients need through the MSA equipment closet.
You may have seen or posed with their MSA shoe that is a clever way to raise awareness of this rare debilitating disease.
At beginning of my cousin's illness, I couldn't fathom his death in 5 or so years. He died of MSA. Joe was so full of life. He had a wonderful laugh or a funny comment about life. The irony of his body and mind being consumed by this disease saddens and bewilders everyone that loved him. This foundation is close to my heart.
Many other people are being diagnosed and have died of this terrible disease. This foundation was created out of love, perseverance and necessity to research and to help end the suffering. The research and awareness created to help MSA needs to continue. This non-profit creates access to information, tools to help the disabled and support for the families.
Defeat MSA provides a community of love and support for those suffering from the most horrible of diseases. I’ve seen firsthand how devasting MSA is and spoken with a number of family members whose loved ones have suffered from this disease. Defeat MSA has increased awareness on a macro level and given hope and real help to those brave individuals who live with this devastating condition.
I have observed this charity grow since it's inception. The charity remains true to its objective of supporting patients and families living with this dreadful disease, through support groups, loaner equipment through the loaner closet program, networking on social media to connect families sharing their experiences across the world. This disease does not have a marathon or a 5k run in its name; the charity uses an intriguing device: a shoe as a symbolic marathon to spread awareness among lay public about this devastating disease.
Defeat MSA is vital to those who suffer with this rare & devastating disease and to their loved ones who can do little more than stand by and watch their family member or friend painfully lose their life to the ravages of Multiple System Atrophy.
Since this disease is uncommon, it is more difficult to attract the necessary funding to conduct crucial research for medications to treat & ultimately cure MSA & funds to provide assistance in the many varied ways necessary to help MSA patients get through the basic day-to-day activities that the rest of us take for granted.
For instance, assistive devices to simply bathe or walk while patients are still able are desperately needed. Thus, I was especially delighted to attend the opening of the Defeat MSA Joseph G Fortier Loner Center in St. Clair Shores last year, the only one in the country that offers durable medical equipment. This is one small but incredible step towards providing help to MSA patients & their caregivers.
My partner of 30 years suffers from MSA . As she suffers then I suffer too as do my stepson-my son and my partners sister. MSA is cruel ,destructive and often goes without correct diagnosis. Defeat MSA is a valuable resource. Initially ,we had so many questions -a lot of which our doctors could not answer. MSA being new to them also. It gave me a place to gather information. To learn what may lie ahead and helped me prepare physically and emotionally for what is yet to come. For a short period during the Summer my family were lucky enough to "host" the MSA shoe. The MSA shoe[s] travel the world raising awareness of the illness. Awareness requires to be raised urgently as we went round Edinburgh's tourist spots and festival shows -no one knew of or had heard of this illness. Although sad it was a pleasure to host the shoe and I now look forward to follow its adventures. Although I live in Scotland I know that Defeat MSA is limited in the support it can give to me and my family I know of the good work it is responsible for by way of sharing equipment with families in need . Defeat MSA introduced me to other people who have the illness . It also put me in contact with other carers looking after someone with MSA ,I cant come close to describing the support ,knowledge and guidance Defeat MSA has given me.
Defeat MSA has been a blessing for myself & my family while we are taking care of our father who currently suffers from this disease! It's been a wealth of knowledge and support.
Defeat MSA’s efforts to increase awareness of this disorder and to engage in advocacy measures for patients have helped to give those impacted by MSA a much-needed, amplified voice in the community. This organization also helps support patients through support groups and the lending closet, which offers loans of specialized medical equipment to those who may not otherwise have access to it. As a member of the St. Clair Shores City Council, I am very grateful to have Defeat MSA active in our community.
Defeat MSA is a truly powerful organization, giving voice to those affected by this little known, devastating disease. I have watched this grass roots effort grow since the beginning as a work of love and devotion by its founders. Indescribable grief and suffering has been channeled into positive action to help fund research and provide support for others dealing with MSA. It is an important and worthwhile organization and I hope to see it continue to grow and prosper.
defeatmsa 10/31/2017
Thank you Elena! We will keep trying to help those that suffer so much from MSA.....
Defeat MSA has made great efforts to increase awareness via the MSA shoe and also, they have made efforts to increase awareness by fundraising for my documentary, that will tell the story of a MSA patient. Thanks for all!!! :)
I have MSA and became familiar with Defeat MSA in it's early stages. The enthusiasm to make a difference was evident from the start and has only gained momentum. I'm a volunteer, participating in the Defeat MSA sponsored video "It's All in Your Head: MSA and the Struggle for Diagnosis" and participating in MSA Awareness tours with the MSA Shoe at the University of Michigan Health Center, Michigan Judges Convention in Grand Rapids and at the Palace for a Pistons game. I'm a financial donor to Defeat MSA and the MSA Shoe. My wife and I are clients served through the Defeat MSA sponsored Caregiver & Patient Support Group Meetings.
As a researcher into neurodegenerative disease, I came in contact with Defeat MSA. They do an amazing job raising awareness around MSA. Defeat MSA puts the spotlight on this devastating brain disorder that deserves much more attention from the research community. Through this work, and the fundraising done to promote research into MSA, I think that Defeat MSA is having an amazing impact!
This organization is absolutely wonderful. My father passed away from MSA in the early 90s. Since then, awareness is increasing. A lot of it is thanks to Defeat MSA organization and their efforts to continue with research and advocating for/educating patients and families. I am very thankful for the help and continued focus on this disease, continued awareness is so important! Defeat MSA is amazing. Thank you so much for all you've done, and all you continue to do.
I have donated to this organization because I am impressed with their efforts towards education and bringing awareness about MSA. I participated in a pub crawl the organization had to benefit MSA. We had an amazing time and met individuals with MSA and many people who lost loved ones to MSA. It is a priveledge to be involved with this MSA organization.
Amazing support and continuous advocacy for this terrible MSA disease that I have to watch my husband suffer from
My brother had MSA. He suffered greatly and no one knew what his disease was, most doctors that we talked to didn't know anything about it. My brother lost his insurance for two years, and we were unable to find him any resources or equipment for his condition.
Defeat MSA is a great nonprofit because it helps patients, it operates one of the few support groups targeted just to MSA in the nation. They also started the MSA equipment loaner closet which loans out durable medical equipment for needy MSA patients. Lastly, defeat MSA has pushed to bring greater awareness about the disease to the general public through the MSA shoe and they led a Kickstarter campaign to support finishing a movie about an athlete with MSA. Thank you for the opportunity to support Defeat MSA !
This group has given so much attention to an orphan illness that most people have never heard of. Their loaner closet provides vital equipment to those in need. Members have become an incredible suppport system so patients and families do not feel so alone.
MSA is a rare disorders of the central nervous system that is often overlooked and for which there is currently no therapy available. Lots of work still needs to be done to find a therapy that might ameliorate symptoms or slow down MSA disease progression. Defeat MSA is a much needed and wonderful organization that raises awareness (e.g. MSA shoe, patient support group) and furthermore supports ongoing efforts to find novel therapies. I proudly support Defeat MSA - Wouter Peelaerts, Neuroscientist
My beautiful Dad George passed away 12 months ago at the age of 67 from this horrible disease it was the most heartbreaking time to watch your loved one suffer and there is absolutely nothing you can do to make it better. We really need to raise so much awareness and find a cure.
I reached out to Defeat MSA, and together we teamed up with our local football team to raise awareness of MSA to support a family within the team who has a member with MSA. They were great to deal with and I am proud to support them.
Mark Lassam, LMFA Cobra Football coach
This organization is wonderful and very supportive to those that need them, my husband passed away in 2009 from MSA and back then there was hardly no awareness this organization had brought awareness to those in need and knowledge to those that seek it...