Rare diseases are a daily battle for some 30 million Americans. One in 10 people in the country are fighting an illness that is shrouded in mystery. The only way to alleviate the unknown – and the burden felt by patients- is through increased research. Patients with rare diseases have tremendous unmet needs, including but… Continue reading

If you want to have the biggest impact possible in the quest to find better diagnostic tools, treatments and hopefully a cure for multiple system atrophy #GivingTuesday (November 28, 2017) is the most important day of the year!  100% of every dollar raised, matched, and won on #GivingTuesday will go directly into the MSA Coalition… Continue reading

Janice Holton, Director of Neuropathology, Queen Square Brain Bank, UCL Institute of Neurology, London, UK Athens, Vravrona: I was fortunate to participate in this excellent meeting held in an idyllic location on the coast near Athens, Greece. The local organising committee, led by Professors Leonidas Stefanis and Kostas Vekrellis, created a fascinating programme attracting speakers… Continue reading

March 21, 2017 A new paper published online this month in the journal Brain “Insulin Resistance and Exendin-4 Treatment for Multiple System Atrophy” has added to a growing body of evidence that drugs designed to treat type 2 diabetes may have potential to treat multiple system atrophy and other neurodegenerative diseases.  In this innovative work, partially… Continue reading

Guest Blogger: Anna Suarez, Communications Specialist | MAAC Rare Disease Day has arrived! On the last day in February the rare disease community can come together to raise awareness and share some common struggles and hopes for the future. Why do rare diseases matter? When considering the group as a whole, the rare disease community in… Continue reading

  By Sarah Duffy-Clinton (In memory of Deb Duffy) We watched our mothers and fathers courageously battle this unforgiving disease.  We need to continue to courageously fight this disease in our loved ones honor; fight for funding to help researchers find answers and continue to support those who are impacted. And the best part of… Continue reading

Watch this 20 minute prerecorded webinar on why and how to raise money for the Multiple System Atrophy Coalition. The webinar includes easy step by step directions on setting up a fundraiser and offers practical tips to make your campaign a great success.

  A Guest Blog Post Written by Dr. Sandrine Wauters, PhD Salerno, Italy, April 22-23, 2016 Attending the Salerno 5th International Congress on Multiple System Atrophy was very beneficial to my multiple system atrophy research in many ways. Firstly, by allowing me to present my poster of recent unpublished data I collected while being funded… Continue reading

A Multiple System Atrophy Caregiver Speaks for Her Husband When Jim and Marilee Anderson discuss their experience with Multiple System Atrophy, Marilee speaks for both of them. While Jim’s cognitive skills are as sharp as ever, his speech has become nearly inaudible. As he whispers, Marilee understands perfectly, relaying and amplifying as Jim nods slightly… Continue reading

A Guest Blog Post By MSA Patient, Dan Gallivan To All of Us, The MSA Coalition and some 75 Individuals have done an outstanding job of collecting $106,000 in donations from family, friends, and co-workers. The $106k will be matched through the generosity of two families. There is a problem, we are leaving $46k on… Continue reading

MSA Fundraising Tips – Simple and Successful To help inspire your MSA fundraising efforts, the MSA Coalition has complied a list of very practical fundraising tips that are proven to work.  If you need to set up your fundraiser you can do so in ten minutes by visiting our fundraiser partner CrowdRise.   You will… Continue reading

Beating back Multiple System Atrophy by ‘Winning the Day’ In 2014, the MSA Coalition selected Tom Looney to be its first patient representative board member. A highly successful executive before being diagnosed with Multiple System Atrophy in 2008, Tom is keen and insightful, with a determined, positive attitude about his condition. In his new role,… Continue reading

How a Diagnosis of Multiple System Atrophy Became a Blessing Diane Graham and Elaine Douglas were married in 2013. They didn’t expect to be spending their 10th dating anniversary at the MSA Coalition Annual Patient/Caregiver Conference, but that’s where they were – and they wouldn’t have had it any other way. For this couple, getting a… Continue reading

“This is a story that a patient wanted read to them the day before they lost their battle. They remarked after reading it to them that one day I would see Two Dragonflies and one would be Fred (my husband ) the other would be them. This call to our Support Hotline and the other… Continue reading

A Shared Battle against Multiple System Atrophy Unexpectedly and in her sleep, Joanne Heard succumbed to Multiple System Atrophy on October 9, 2015. “Sudden Death,” one of the many syndromes of Multiple System Atrophy and a leading cause of death from the disease, took Joanne at age 69. Nolan Heard, Joanne’s husband of 48 years,… Continue reading