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Multiple System Atrophy Coalition

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Nonprofit Overview

Causes: Health, Voluntary Health Associations & Medical Disciplines

Mission: The Multiple System Atrophy Coalition is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of assisting researchers to find a cure. In the meantime, The MSA Coalition also provides much needed patient and caregiver support, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community. At present, a minimum of 75% of all donations go directly into a dedicated Multiple System Atrophy Research Fund supporting an annual research grant program. The MSA Coalition also has a world-class scientific advisory board (SAB) to review and award research grants to the most promising MSA research proposals.

Results: The Multiple System Atrophy Coalition has had a significant impact on the MSA community. Hundreds of MSA patients and caregivers access our dedicated toll free support line annually, obtaining advice and counsel from experienced caregivers. As of 2018, 36 MSA research projects have been funded for a total of over $1.7 Million. Additionally, the organization is now actively involved as a leader in awareness and advocacy events that will advance issues important to the MSA community. The organization is also funding annual educational events for healthcare providers to improve diagnosis and care and is expanding outreach to physicians and scientists through attendance at major neurology and neuroscience conferences.

Target demographics: Families affected by multiple system atrophy

Geographic areas served: United States and globally

Programs: Toll free support hotline, annual support conference for patients and families, research grants to scientists, education of physicians, advocacy

Community Stories

47 Stories from Volunteers, Donors & Supporters

2 Tom T.1

Client Served

Rating: 5

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.

2

Donor

Rating: 5

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.

1

Client Served

Rating: 5

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.

3

Client Served

Rating: 5

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!

1

General Member of the Public

Rating: 5

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.

1 Robert T.1

General Member of the Public

Rating: 5

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.

4 Paula K.1

Board Member

Rating: 5

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.

1 DonMSA

Board Member

Rating: 5

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.

3

Client Served

Rating: 5

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!

5

General Member of the Public

Rating: 5

My mom, Joan Gardner, struggled to find a diagnosis that would explain why she experienced so many physical symptoms. She saw many doctors including specialists, but none could give her any answers. She was falling and having great difficulty with her digestive system. She began shuffling her feet and losing her balance. Neurologists couldn't tell her why this was happening. At one point someone suggested she might have Parkinsons. About 6 after her symptoms began to progress, she was sent to nephrologist as her blood pressure was all over the place. It was then that we learned that mom had the symptoms of a disease called " Shy Drager" otherwise known as Multiple System Atrophy. Falls became regular, urinary tract infections were non stop and my mom suffered from what we learned was gastroparesis. Every day was a struggle for her. She also had symptoms of dementia which were initially diagnosed as early onset dementia, but was likely Lewy Body Dementia closely related to MSA. I became my mom's primary caregiver. It was difficult to see my mom struggling day after day. The MSA Coalition and Carol Langer were my only supports. Once a month I waited to connect with others through a caregiver webinar to hear that I was not the only one experiencing these feelings. Carol and Vera were informative and compassionate. I knew I finally had support.
Each fall we walk to bring awareness and at the holidays we contribute to the Holiday fundraiser with the hope of finding better diagnostic tools, treatments and hopefully a cure.
Research projects funded by the MSA Coalition will hopefully help find answers to help with proper diagnosing, better treatments and of course a cure. Research is costly. Thank God through donations and the team put together through the Coalition, they are able to provide researchers with funding to do this important work. The members of the Coalition work tirelessly to fund a patient/caregiver conference each year, and man a patient/caregiver support line. Printing materials to bring awareness, webinars, maintaining a website that provides valuable information cost money. It is the only organization I fundraise for. This is a top notch organization and I am so thankful for all they do.

1 Blake A.1

Client Served

Rating: 5

When I received dx for.MSA, I was scared and confused. It is such a rare disease, my family doctor hadn't heard of it. Finding the MSA Coalition has been a blessing. The website contains a world of useful information, the staff is always responsive quickly and the Facebook groups are wonderful allowing patients to connect.

Blake Adams

2

General Member of the Public

Rating: 5

My father, Stephen Wall, was one of those people who just had this amazing effect on everyone he met. He never met a stranger, and touched the lives of many. His kindness and sense of humor were second to none. He was my best friend. One day my dad woke up with flu like symptoms. After some time in the hospital, they misdiagnosed him with Parkinson's. Shortly after, my mother took him to Charleston, SC for special testing. It was there that they diagnosed him with MSA and my world was turned upside-down.

I'll never forget the day he printed out information on the disease for me and I read the words 'Prognosis from diagnosis is 10 years'. It was in that moment I knew my father was dying. My worst fear was coming true. How could ten more years ever be enough? How was I going to face this?

I moved back in with my parents to be a helping hand. I also wanted to spend as much time as possible with my father. Over the following years we spent every weekend together, seeing movies. I came home for dinner from work every night to spend time with him. Over the years I saw him start to deteriorate in front of my eyes. He was in pain 24/7 and no medicine could touch it. His muscles were constantly seized up and he had to walk with a walker. He never lost his spirit though. He cried and fought, and it was hard, but he got up everyday and put a smile on his face and lived as normally as this horrible, unfair disease would let him.

A week before Christmas in 2012, he woke up shaking, with a fever. We took him to the hospital thinking it was just another bought of pneumonia. It wasn't. Fluid had built up in his lungs because the MSA wasn't allowing his lungs to heal. His lungs were failing. On December 19, 2012 at noon, my father passed away peacefully in his sleep. They had him sedated and comfortable, and for the first time in 6 years, no longer in pain.

I didn't know about the MSA Coalition at the time and I wish I had. I wish I had the support system and resources to get my family through this hard time. It has been almost 5 years and I still wonder what could have happened if my father hadn't gotten this awful disease, and if there was a cure.

I am getting married next month and his life wish was to walk me down the aisle, and he won't get to do that. No one can give that back to me, but knowing there are people out there fighting for this cause so someone else's father can walk them down the aisle gives me hope.

Thank you for what you do.

5 ErinKnutsonW

Volunteer

Rating: 5

The Multiple System Atrophy Coalition has been a saving grace since the beginning. My mother, my hero, was diagnosed with MSA in late 2012. She fought hard and with determination to spread awareness about this rare and unknown disease. Sadly my mother lost her battle on Dec. 30th, 2016. Now I continue her fight. All along the way the MSA Coalition provided critical information, support, guidance, information, and friendship. My family has felt immense love from this whole team, all volunteers. The Coalition not only pushes the need for research funding, but provides an invaluable community for patients, caregivers, and loved ones. They offer hope to all, including family and friends of MSA patients who want to DO SOMETHING. The Coalition encourages fundraising and opportunities to raise awareness, get the word out there. My goal is to become and MSA Coalition board member when the timing is great. Thank you to Pam, Cyndi, Don, Carol, Judy, Vera, and the rest of this incredible team. You made the unbearable just a bit easier. RIP to my beautiful and courageous mom, Deborah.

2

Client Served

Rating: 5

We are so appreciative of Vera James, Pam Bower, Carol Langer, Gary Rose and all the wonderful volunteers in the MSA Coalition. They truly have been a lifeline since my husband Bill was diagnosed in 2011. The conferences and videos of the conferences have provided excellent information. Thank you for all you do for patients, caregivers and health professionals.

5 Carina Peritore

Volunteer

Rating: 5

Our family's story began in 2001 when my dad first complained of a "shhh," ing sound in his ears. Within one year he was not able to walk straight, as if he were drunk. Within 3 years, he was in a wheelchair because he would pass out upon standing up. Our first doctor was a neurologist who told us he had cerebellar ataxia but gave no indication of what this stemmed from. After an MRI showed us an atrophied cerebellum, we found a doctor at the UC Davis Medical Center who specialized in MSA. There was relief in a diagnosis but terror at the outcome of this devastating disease. My father passed away 8 years later, bed-ridden, unable to speak, eat or move voluntarily. The disease paralyzed his body, with the exception of unwanted tremors, yet his mind remained intact. He understood what was happening to him but could do nothing about it. He cried at sad commercials and laughed at the funny ones, almost uncontrollably. It felt good to hear him laugh but when he cried, we all cried. I want to remember the good times we had but his accelerated progression toward death will haunt me, forever.

The MSA coalition is the only organization taking this disease seriously as it is comprised of patients, caregivers, relatives of deceased patients, scientists in the field and doctors.

3 Brittany64

General Member of the Public

Rating: 5

Four years ago my dad was diagnosed with MSA-C. We didn't know much at all about this disease. We googled it. The information that we came across was so different and confusing. As a family we became my dads caregivers. About two years ago we found the MSA coalition and they have been an among support and information place. We lost my dad in the summer or 2016. Everyone apart of this coalition has been amazing. I am so happy that I have found this coalition and plan on helping others like my family has been.

3 Caren2

Client Served

Rating: 5

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!

Previous Stories
3

Client Served

Rating: 5

The MSA Coalition organizes support websites, fabulous fundraising events, opportunities to meet other patients and caregivers at informal gatherings, and both Local and International conferences with speakers familiar with research or symptom management ideas. They provide caregivers and patients with chances to meet doctors and researchers face to face. Since MSA is such a rare disease, patients and caregivers often need to provide their own training for the doctors and nurses they encounter. I don't know what my husband, who has MSA, and I , his full/time caregiver, would have done without the information to share regarding this rare and debilitating disease. The MSA Coalition and its many facets of support and information have given us a lifeline to hold on to and gain encouragement from!!! Thank you Coalition staff!

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4 Cyndi H.

Volunteer

Rating: 5

WE NEED YOUR HELP to Defeat Multiple System Atrophy!

Our story began in 2008 with odd symptoms when my husband Mark thought he was walking funny in his boots & wanted a different pair to see if itwould help....it didn't. Then on a motorcycle run he nearly lost control of his bike going around a corner. Knowing something was wrong, we started seeing doctors. Doctor after doctor, test after test we were told there was nothing wrong. Finally, after being very persistant for an answer we got a diagnosis of Cerebellum Ataxia. Knowing we could live with that we would just have to adjust our lives to handle the condition.

Then he started developing new symptoms. He became very dizzy, had double and blurred vision, digestion problems, swallowing problems, dysfunctional bladder and then ended up with a permanent Foley catheter. He lost his ability to walk, talk, write & had constant headaches. Pain in his legs all the time on a daily basis with severe edema!
Low blood pressure that was hard to regulate causing him to nearly pass out upon standing, then severely high blood pressure, difficulty breathing, severe Sleep Apnea causing him to stop breathing 19-24 times an hour and the list goes on and on.

Finally his doctor said there was something else going on so we continued with more tests!! Then they found the answer in his brain scan. The doctor explained to us the Cerebellum in the brain should be thick & dense, about the size of a large grapefruit, but the scan revealed his to be shrunk down to the size of a 50 cent piece!! His body filled the empty space in his head with spinal fluid making his head feel sloshy all the time. He couldn’t handle sudden movements at all, turn his head or his eyes without feeling sick & dizzy. He had MSA, Multiple System Atrophy, a cruel neuro degenerative progressive disease with NO CURE!!! We wanted a second opinion so we went to Mayo Clinic in Rochester MN. After 2 long days of nonstop tests we got the same answer… MSA!!!
In the spring of 2013 our whole world came crashing down with this diagnosis!!!

We were devastated!!
My husband was a strong man with his whole life ahead of him yet he lost everything, his hopes, his dreams & his dignity. He was completely dependent on me.
I cared for him every day 24/7 until October 18th, 2016 when he made his final home in Heaven.
We need answers about how to find this earlier and understand it so we can know how to treat it and STOP THIS DISEASE or at least know how to control it!!
I miss my husband so much....
He was only 59 when this disease took his life!!!
There were 2 things this disease could NOT take from my husband....
his humor & the love he had for me & his family!!!
The MSA Coalition has been a great help to us...they are always there to help & to connect us with the help we needed in any way.

We need a cure for for this horible disease....Multiple System Atrophy is a Ruthless Monster!!!!

My husband was only 59 when this disease took him. He had many more years ahead of him to enjoy his life....now there are just memories & heartache....
PLEASE HELP FIND A CURE!

In loving memory....

Mark James Hungerford
January 17, 1957 - October 18, 2016

2 Elly3

General Member of the Public

Rating: 5

My father passed away from MSA in June 2016. I didn't become aware of the multiple system atrophy coalition until a little later but found them to be a valuable tool of information on this rare disease. It is also nice to have an MSA community for general support, as so little is known about this illness and a cure is desperately needed. Although my father was brace and accepted his illness, watching my him struggle with this illness was the hardest thing I have experienced. Multiple system atrophy coalition keeps me in the loop of any of the latest research developments and general information of MSA

1

Board Member

Rating: 5

I have been privileged to be a part of this organization for almost 19 years - I first became aware of them when my husband was diagnosed with MSA and attended a conference in Cleveland, OH. Since then I have not only attended many other conferences, I have joined the board of directors. It is an honor to be able to help others through this wretched illness, and to "pay forward" the help I received along the way.