Multiple System Atrophy Coalition Testimonials
“What do you do when you are diagnosed with a rare, terminal, neurodegenerative disorder with no cure? Struck down in my early 50s with children still at home, and a career I loved but could no longer function at the same level? All the internet searches were so disheartening and most doctors have no experience with it which delays diagnosis and symptom management by years. I found the MSA Coalition and there were other people like me all over the world! This international group advocates for research, fundraising and provides support for patients and caregivers. This organization has given me hope.”
Belinda Franklin – MSA Patient
“I was diagnosed with MSA back in 2014. Although it’s a
very difficult experience, I have been supported by my wife, my family, friends, caregivers and the MSA Coalition which has been right with me seeking new treatments and therapies all along. The Coalition has funded many studies and is working hard to eradicate MSA. Please help them when you get a chance.”
Jim Gorman – MSA Patient
“The seed grant program of the MSA Coalition will make a tremendous difference to MSA research and, ultimately, to patients. I think, most importantly, it attracts researchers to the field of multiple system atrophy research, providing an avenue through which they can change scientific direction or apply their ongoing research to MSA. In my case, this proved to be exactly what happened. I had been developing stem cell-based approaches for drug discovery in Parkinson’s disease. The MSA Coalition seed grant gave me the vital research support to apply my findings to MSA, a disease I had been focusing my efforts on in the clinic. This has led to tremendous research, clinical and funding opportunities for me – indeed, I was recently recruited to a major academic center in Boston to specifically build a clinical and research program centered on MSA and related disorders. None of this would have been possible without the seed grant – thank you, MSA Coalition!”
Vikram (Vik) Khurana, M.D., Ph.D
Departments of Neurology,
Massachusetts General and Brigham and Women’s Hospitals
Harvard Medical School
Scientific Co-Founder and Vice President (Discovery Technologies)
Dr. Vik Khurana, Boston, MA
“My team and I are working to make a difference to reduce the burden of neurodegenerative disorders on society. Therefore, we are very grateful to the MSA Coalition seed grant program for supporting our newest project in the lab. Until recently our research had focused on drug discovery for Parkinson’s and Alzheimer’s disease. With MSA Coalition funding we can now assess the preclinical efficacy of a drug that is already FDA approved for multiple sclerosis, in MSA models. We will evaluate the nervous system as a whole, and the specific glial cells that are killed by MSA pathology. Together we are working to find therapies that will slow or halt the progressive brain damage associated with MSA. Successful translation of our preclinical findings to the clinic would be a breakthrough for patients with MSA and related disorders. Thanks MSA Coalition for your valuable support!”
Ruth G. Perez, Ph.D.
Associate Professor of Biomedical Sciences
Center of Emphasis in Neurosciences
Paul L Foster School of Medicine
El Paso, Texas, 79905 USA
Ruth Perez, PhD,
“I began taking Northera (Droxidopa) in May of 2015. Before taking this medication I tried several others which would help only slightly but with dangerous side effects. I would pass out on a regular basis prior to this drug due to NOH related to MSA. My life was a battle everyday. The first dose I was started out on was 100mgx3 daily. The initial dose helped some but not very much. I am currently taking 300mg x3 daily. This has significantly helped my NOH and my daily quality of life. I have virtually no side affects other than an occasional headache which may not even be related to the use of Northera. I had previously read about this drug being used in Japan for many yeas. I further found that it was not approved for use in the United States. I often wondered why but trusted in God and the FDA that it would one day soon be available here.
After reading several articles on Northera, I saw that the MSA Coalition was playing a big part in getting this drug approved in the US. I learned of the tremendous effort being made by the MSA Coalition and I offer my sincere thanks to them for their efforts. The MSA Coalition and the FDA have improved my daily life with the approval of this drug. This drug has allowed me to spend valuable time with my 3 children and feel like a part of their lives. To the MSA Coalition and the FDA, I say thank you.”
“I just wanted to thank The Multiple System Atrophy Coalition for the information you supplied me which was very helpful. With your help, I was able to put together an information package for staff at the long term care facility in which my patient resides and present an in-service educating the staff about this horrific and rare disease, which enabled us to alter her care plan to meet her specific needs. She reports that slowly, the staff seem to be providing better care as they learn about the disease and it’s effects. Because of the multitude of symptoms such as sleep disturbances and anxiety, it is difficult for staff to understand all the complexities of the illness and their particular effects on her, but we’re getting there, I believe. Last week we had a physiatrist come to assess her left arm for the rigidity and contracture of her left hand and, although he is a well known and experienced doctor, he had never even encountered a patient with MSA! Quite a learning curve for all of us.”
Jennifer Cummings, R.N., B.N., CHPCN(C)
“The Multiple System Atrophy (MSA) Coalition and its associated groups link people around the world who either have this horrific disease or are caregivers of MSA patients. MSA is a rare, fatal neurological disease. By linking people worldwide who are impacted by it, we give each other support, advice and information about this disease and how to cope with it. The Coalition and its affiliates represent one of the best uses of social media I have ever experienced. All in the MSA community know that they are not alone, but are journeying with others who can provide emotional support as well as real useful information for the care of those with MSA. Being part of this community is life changing and life affirming in the midst of facing death. And it is a force for change as it supports research on the causes and potential strategies for holding the disease at bay. Being a rare disease (only 3300 people in the UK and Ireland have it; about 15,000 have it in the U.S.), it gets little attention from the larger health community.
“I am so grateful to the MSA Coalition for their efforts and success to get Northera approved by the FDA. I was first given Midodrine to try to control my blood pressure, but that was changed to Northera after I was hospitalized from a fall in March. The MSA Coalition has done so much to educate everyone on this medication. Northera also has a support line that has assisted me several times. Since I started taking Northera I am having less falls and I have had little or no side effects from taking Northera, which is important to me with the amount of medication I take daily.
Since MSA has no cure and no treatment options it is wonderful to have support groups like the MSA Coalition. I also have two support groups online and I actively answer questions online when someone has first been given the prescription for Northera. I have been blessed by the hard work that people in the MSA Coalition do and continue to do to help MSA patients to be as normal as possible.”