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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 (MSA) Coalition® is a positive beacon of hope standing up to a little known, rare, insidious disorder. For over 30 years, the MSA Coalition has been devoted to improving the quality of life and building hope for people affected by multiple system atrophy by focusing on a four-pillar mission: Providing patients and caregivers with trusted and compassionate emotional support; Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information; Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure; Building a sense of community by connecting and unifying people affected by MSA

Results: The MSA Coalition is the premiere US nonprofit organization dedicated to support, education, research and advocacy for this devastating neurological disease. Thousands of participants benefit from the annual MSA Coalition Family Conference, which is live streamed and posted online. With multiple online discussion groups and a dedicated support line, someone is always there to help. As the host of the first-ever Global MSA Advocacy meeting, the MSA Coalition works with other like-minded charities to foster a community of support and care. As the leading nonprofit funder of global multiple system atrophy research, the MSA Coalition has a proven track record of catalyzing research collaborations, and with the advice of our world renowned Scientific Advisory Board, selecting and funding the most promising research efforts around the world. As of 2019, $1.7 Million has been granted to 36 MSA research projects at 20 research institutions. Learn more at http://www.multiplesystematrophy.org/ or call our support hotline tollfree 866-737-5999

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

79 Stories from Volunteers, Donors & Supporters

1 eed121

Volunteer

Rating: 5

My mother, Eileen Dyas, was diagnosed with MSA the summer before she passed away in October 2017 at the age of 68. As a result, we (unfortunately) found out about the MSA Coalition and all of its resources a bit late. Since her passing, we've utilized the Coalition's resources, supported its mission, and attended the annual patient and family conference which helped us connect with others in the community, further understand the disease and provided us with needed closure. With its focused mission to support patients and families, educate the medical community, advocate on behalf of MSA patients, and support global research funding and brain donation, the MSA Coalition is doing important work to find a treatment and cure for this rare and terrible disease.

3 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.

5 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.

3 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.

4

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!

6

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.

2 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

6

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.

6 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.

6 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.

5 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

3 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.

1 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

1 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.

1 Amy_327

Client Served

Rating: 5

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

1

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!!!

3 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.

7 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.

6 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!

3

Volunteer

Rating: 5

Selbst an MSA erkrankt, bin ich Pam Bower und der MSA Coalition sehr dankbar für die bereits geleistete internationale Aufklärungsarbeit und die gelungene Bündelung der wissenschaftlichen Bemühungen um diese seltene Krankheit.

6 Hasan H.

Professional with expertise in this field

Rating: 5

Multiple System Atrophy (MSA) is a rare Orphan neuro-degenerative disease. Orphan diseases such as MSA are disenfranchised from drug development in the Pharmaceutical industry since investments in rare diseases do not yield returns. MSA is rapidly progressive within a few years and currently has no effective treatments nor any cure. This is where the work of the MSA coalition comes into picture. Since 2014 , MSA coalition has supported 17 projects with 600,000 being spent from funds. Just last year MSA coalition managed to raise $174,074 through Crowdrise's Giving Tower holiday Challenge. MSA coalition holds an active support community of passionate , active volunteers and employees and also held a conference last year for caregivers of MSA. I am hopeful and optimistic that with the passion and grit that all of the members of the coalition , that an effective treatment would be found within coming years through active research , and hopefully a cure in one day as well so families and patients no longer suffer from this cruel disease! :)

6 danstune

Client Served

Rating: 5

The Multiple System Atrophy Coalition is instrumental in our lives in helping us face my illness knowledgeably, with necessary support and information. We have participated in the online forum, the various web page opportunities, the Facebook locations and in-person meetings and conferences. These opportunities have been greatly helpful, as have the organizers, contacts and the many caring people we have met and correspond with. We are much in their debt as our friends and confidants as we fight a debilitating disease which attacks the neurons in my brain, causing mobility and tremor issues, along with many bodily functions of a vital nature. This group has educated us and encouraged us. We have been shown kindness, generosity and caring, while developing deep friendships. Dr. Greg Wenning has been helpful to all patients and caregivers, providing answers to questions online and leadership in determining areas of research that would find solutions to unlock the mysteries of the causes of this grave disease. Several others, including Pam Bower, Vera James, Robin Riddle and Gary Rose have each been so helpful and dedicated, in particular. We are unable to name all the friends-- patients and caregivers-- who have impacted our lives similarly. We are appreciative and believe this is the best nonprofit group available for brain diseases and that it should be recognized accordingly.

6

Client Served

Rating: 5

My mother has MSA. The MSA Coalition has been there for us any time we need support or guidance. They're quick to respond and kind. The website is our go-to resource for accurate information.

6

Client Served

Rating: 5

The MSA Coalition are active in raising awareness, funds, supporting research. They also provide a great many services - as I am in Australia I access their online information through facebook and yahoo support groups. They also have many resources listed on their site. Pam Bower works tirelessly on behalf of the organisation.

5

General Member of the Public

Rating: 5

I first had contact with Pam Bower and Shy-Drager/MSA support about 14 years ago when there was nowhere else to turn. Their support was crucial to my wife's quality of life and emotional well being. Although she passed away in 2004 I am thankful every day for the work the MSA Coalition continues to do and the research it sponsors.

6

General Member of the Public

Rating: 5

When my sister was first diagnosed I discovered the MSA Coalition. The information provided has been a great help.

8

General Member of the Public

Rating: 4

When my husband was diagnosed with MSA, the Multiple System Atrophy Coalition was the first organization I reached out to. They have a hotline, and I got immediate support and feedback. They had a DVD on the disease, which they sent me. I even passed it on to my husband's specialist.

I continue to be connected to them even though my husband passed away from this horrible disease. They are working to make a difference for an under-recognized illness.

5 Hannah F.

Donor

Rating: 4

I have used the MSA Coalition and their support since finding out about my Mother's MSA. Pam and the team has been instrumental in getting information out to patients and raising awareness for MSA.

5

General Member of the Public

Rating: 4

I got diagnosed with MSA in December 2013 and of course I knew nothing about MSA. Thanks to MSA Coalition I would say that I am a very informed patient and I am kept informed and updated on research and other patients(which is sometimes very sad). Without MSA Coalition I would have to do a lot of research myself