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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 2015, 17 MSA research projects have been funded for a total of over $600,000. 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

36 Stories from Volunteers, Donors & Supporters

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.

3 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.

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.

2 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.

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.

1 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
2

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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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

1 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

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.

Kym_

Client Served

Rating: 5

My mom Connie Lopez lost her battle to Multiple System Atrophy in Las Vegas, NV November 2012 at the age of 59. She was diagnosed finally in late 2010 at Stanford University after showing symptoms four years before that. The Multiple System Atrophy Coalition is amazing, the people you get to meet all around the world is sad, but amazing at the same time. A horrible disease has brought so many people together to fight for a cure for a disease that we have learned so much about over the last 10 years. However, there still isn't a cure so we need to continue the Fight..xoxo

Gretchen21

General Member of the Public

Rating: 5

My mom unfortunately passed in 2015 at the age of 65 from this horrible disease. When my mom was diagnosed my family had no idea what MSA was or how to treat it. The MSA Coalition has a weath of information that I could not find anywhere else online and helped me to understand the different stages of the disease. I pray to be able to see the day a cure is found and pray for anyone that has be diagnosed with MSA.

Amy_327

Client Served

Rating: 5

Great source of information for those diagnosed with MSA and their loved ones.

Client Served

Rating: 5

When my brother was diagnosed with MSA in 2013, our family found the MSA Coalition to be a most helpful resource for information, help, and support. The monthly webinars allowed us to share concerns and ask questions of others in our situation. Tha MSA staff was only a phone call or an email away.

As I've come to know the MSA Coalition board members and other fellow MSA Warriors affiliated with this group, I've found a unique family. My brother is now gone, but the relationship I have with the MSA Coalition will not end. I've seen awareness, funding of research, and support for MSA patients thrive in the short time I have been associated with the Coalition, through their tireless and selfless work in promoting awareness of this awful disease. God bless the MSA Coalition in all they do!!!

1 Marcia Y.

Client Served

Rating: 4

My husband was diagnosed with MSA. The MSA Coalition was the first group that I reached out to. Someone called me immediately to talk me through the shock of what was coming down the pike.

I kept in touch with them, and called them to let them know when my husband died.

I hope that more money will be allocated to this disease, that is so unknown, to help those who are afflicted.

I really appreciated the support the MSA Coalition gave my family.

5 Chris217

Client Served

Rating: 5

The MSA Coalition should be held as the standard of what a charity should be. Their total dedication to the MSA community is evident from their support services for those afflicted with this terrible disease to their fundraising and awareness support. I cannot speak highly enough about this organization or the people behind it.

4 Dan_85

Client Served

Rating: 5

When I was diagnosed with MSA I received a brief explanation and "Honey I am so sorry", that is a Southern thing, with the final comment, "Do the things you have always wanted to do, go have fun".
I read as much as I could about MSA and then some more. I was missing something. I needed to talk with people that had this disease, I needed help to understand it and I thought a support group would be helpful. I contacted the MSA Coalition. They helped me more than I could hope for and expected. I did get the help I needed with the support group and the the Coalition staff gave me their assistance. They are a terrific staff and very considerate of our needs.
I have been involved in three fundraisers so far for the Coalition to help raise money for research. I will continue to help as often as I can. I feel I am not only helping me but I am helping the staff that helped me better understand my Illness.

1

General Member of the Public

Rating: 5

MSA Coalition is an amazing organization that raises awareness and provides much needed support and resources for this Neuro degenerative disease.

3 jackievb

Client Served

Rating: 5

I wish everyone with a rare disease was as fortunate as I to have a non-profit organization like the Multiple System Atrophy Coalition for support. I have benefitted tremendously by my involvement in the annual MSA conference where crucial, up-to-date information is shared. I have met many wonderful people there who have shared ideas, laughter and tears. It is comforting to connect with other in the same circumstances who understand the difficulties of this disease. The MSA Coalition’s assistance has been indispensable in planning a fundraiser to support medical research. I truly appreciate that 75% of the money raised for the MSA Coalition goes to research; what we all want most of all is a cure for this disease. It is so comforting to know that there is one place for support, advocacy, research, and education.

6

Client Served

Rating: 5

MSA is so rare, most medical practitioners have never heard of it. The MSA Coalition provides personal and online information that I use regularly. Even our neurologist (who specializes in movement disorders and particularly atypical Parkinson's Disease) does not have information that is available through the Coalition. But it's the caring that exudes from this group that makes it special

6

Client Served

Rating: 5

After being diagnosed with MSA in 2008, the MSA Coalition became invaluable to my family and me. The group's web presence (lots of helpful info and links to key resources), plus their personally engaged volunteer support network are amazing. Each year, the group's breadth and depth has expanded and they now invest $500,000 in up to ten research grants to high-potential applicants. All this, with an all volunteer board that doubles as staff! This is a GREAT non-profit!