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 Firstly, by allowing me to present my poster of recent unpublished data I collected while being funded… Continue reading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





A recent article reported that multiple system atrophy (MSA) exhibits some properties of a prion disorder in a mouse model.  This research helps to move our understanding of MSA forward in many ways, and may offer new insights into treatment strategies.  At the same time, it is important to note that the term “prion” in this particular case does… Continue reading



Like most anyone who ever had the pleasure to meet Kerry Simon, I was hit hard by his passing this week due to complications related to MSA. Every MSA patient (and their main caregiver) is very special to me, and I’ve met a few dozen in person, and scores more online. Kerry felt the same… Continue reading




The official color of multiple system atrophy awareness is purple.  As such, we want to celebrate the 30th anniversary of Prince’s Purple Rain album, while generating greater awareness for MSA. The MSA Purple Rain Challenge (#MSAPurpleRain)is simple:   Put on your purple (preferably an official MSA Coalition tee-shirt) Invite your friends, family, and/or coworkers Set… Continue reading


Science is the discipline used by researchers to answer questions and/or test hypotheses. The results of a scientific investigation may be for a specific subset or can be generalized. If, for example, a small sample size yields a particular result it in no way means that same result will fit with a larger sample size.… Continue reading



Does advocacy make a difference for those suffering from multiple system atrophy?  You bet it does and the more people that participate the better. When you suffer from a rare, little known disease like multiple system atrophy it is easy to feel isolated and alone.  Often it can take years for a proper diagnosis and… Continue reading



During our Annual MSA Support Group Patient/Caregiver Conference in September 2012, it was apparent that a decent number of patients were suffering from low blood pressure symptoms, but had not been diagnosed or treated for the condition.  We also frequently hear stories about MSA patients suffering for a few years from lightheadedness and other symptoms… Continue reading



Over the next 5 weeks, from August 21 through September 24, 2013 The Multiple System Atrophy Coalition is competing in a fundraising challenge called #STARTaRYOT on CrowdRise.  The top nonprofit fundraiser over the 5 weeks wins $75,000.  Second place gets $50,000.  Third place gets $25,000.  Throughout the 5 weeks there are bonus drawings were nonprofits… Continue reading



Below is a guest blog post from a caregiver dealing with mesothelioma – Cameron Von St. James.  While the disease it very different from multiple system atrophy, caregivers of people with different diseases can learn from each other. The Day I Became Her Caregiver November 21, 2005.  It’s a day that is forever etched into… Continue reading