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.
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.
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.
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.
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!
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!
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
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
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.
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
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.