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

A Guest Blog Post by Mark Freifeld First the laugh:  A guy dies and finds himself in Heaven standing in a line of people waiting to pass through the Pearly Gates. As he’s waiting in line, he looks around and notices off in the distance an old man with a white beard, a white lab… 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

The National MSA Support Group supports and participates in the Autonomic Disorders Consortium (ADC).  The ADC was established in August 2009 as a Rare Disorders Clinical Research Consortium (RDCRC).  The consortium is made up of physicians specializing in autonomic disorders, scientists, nurses, patients and support groups.  The Autonomic Disorder Consortium is solely focused on finding… Continue reading

The 2013 multiple system atrophy (MSA) Support Group Meeting is being planned for the weekend after Labor Day.  Dr. Tom Chelimsky, one of the Support Group’s long time board members, will be hosting the meeting in Milwaukee, Wisconsin.  The Support Group is very pleased to begin planning next year’s meeting with so much lead time. … Continue reading

We want to close out Multiple System Atrophy Awareness Month by making the unified voice of the MSA community heard in Washington, DC and elsewhere!  Writing letters to your elected officials about multiple system atrophy is an important way to spread awareness and to help ensure our lawmakers keep rare disease research in mind as… Continue reading

The Social Security Administration (SSA) has asked the National Organization for Rare Disorders (NORD) to identify patients or relatives of patients willing to be interviewed about the value of the SSA Compassionate Allowances  program and how it has been helpful to them. As Multiple system atrophy is on the Social Security Administration’s Compassionate Allowances list NORD… Continue reading

A great Olympic champion, Olga Korbut, is helping to raise awareness for Multiple System Atrophy.  “Olga Korbut, also known as the “Sparrow from Minsk”, is a Belarusian, Soviet-born gymnast who won four gold medals and two silver medals at the Summer Olympic Games, in which she competed in 1972 and 1976 for the USSR team.”… Continue reading