Message from the Vice Chair

With the new year beginning, it is the perfect time to thank our many volunteers. Volunteerism is especially important to the Multiple System Atrophy Coalition. For over thirty years, volunteers have worked tirelessly to build a nonprofit that truly meets the needs of those affected by MSA. Our volunteers take on many forms, and each one is important to us. So, whether you are a board member, a patient or caregiver representative, a research or medical advisor, a volunteer blogger, bookkeeper, social media advocate, conference helper, grass roots fundraiser, or an individual donor, please know how appreciated you are.
 
As we move into the 2020s, especially with the troubling times our world has faced, two things cross my mind. First, the MSA Coalition has accomplished so much. Even during a pandemic, we held our conferences, funded research, hired full time staff including an Executive Director, and had a great year-end fundraising campaign. It’s always amazing what dedicated volunteers can accomplish. Second, The MSA Coalition is now positioned to make a greater impact over the decade to come. Our new Executive Director and her team are loaded with passion, excitement, and skill to deliver the best-ever support and educational programs to those impacted by MSA. Our board members and volunteers are energized to focus their time on projects that suit their strengths and passions. Together, we will witness breakthroughs in MSA diagnostics and treatments, participate in outstanding educational events, and benefit from better informed healthcare providers.
 
Thank you for your efforts in support of the MSA Coalition. MSA is a rare disease, but it has not diminished the dedication and passion brought to our cause. Without your help and support, the charity that exists today would not be possible. We hope to see you volunteering your skills in 2021 and beyond.
 
With sincere appreciation,
 
Don Crouse
Vice Chair and Volunteer
The MSA Coalition

Read Don’s full message here
 

MSA Coalition Welcomes Sheila Lyons as Executive Director

Cyndi Roemer, Chair, Board of Directors, The MSA Coalition announces Sheila Lyons as the MSA Coalition's new Executive Director:

“The MSA Coalition is happy to welcome Sheila Lyons as our first Executive Director. Since partnering with MCI and professional staff in July, we have worked to identify the best candidate to serve as the MSA Coalition’s first executive director. Sheila has the strong background in non-profit management that will help the MSA Coalition enhance and expand our key services and programs. But just as important, she also has the heart and compassion that will enable her to meet the needs of our patient and care partner community.”

Read the full press release here

Join us on February 5 as we discuss the COVID-19 vaccines with the MSA patient and caregiver community.  Learn about the vaccine, timing, associated risks, and special considerations for people with MSA. Scheduled speakers UT Southwestern Medical Center's Steven Vernino, M.D., Ph.D., Elisabeth Golden, M.D., and Chidimma, MSN, GNP, ANP-BC, ACHPN. The MSA Coalition will send an email announcement with more information, including time and how to register soon!

Hospital Visits
Hospitals are difficult places for MSA patients. It seems counterintuitive, but even highly trained medical staff in a top facility will have little to no experience with MSA. And there you are … with your loved one who has an acute medical problem or even a life-threatening emergency. The good news is that you can help navigate the situation … if you are prepared. Read some useful resources to plan ahead.
 
Read more about preparing for hospital visits
 
Webinar: How to Boost Your Immune System
Janet Edmunson, M.Ed., invites family and professional caregivers to attend her free webinar, How to Boost Your Immune System, on February 9, 2021. Whenever we are caregiving, we can easily have our energy drained, making us susceptible to illnesses like the flu and Covid 19 as well as to other diseases like autoimmune diseases and cancer.  Janet will discuss ways that we can, and can’t, boost our immune system so that we are more fortified to resist illness and diseases. 
 
Register for the webinar
 
View Recordings from the CurePSP Conference
All sessions from the 2020 CurePSP Virtual Caregiver & Family Conference can now be viewed online – including “If I Knew Then What I Know Now, MSA Coalition Panel” featuring MSA Coalition Board Members Diane S. Adkins, MA, Elaine Douglas, and Larry Kellerman, Ph.D.

Watch the videos

MODAG Initiates First-in-Patient Phase 1b Trial for Anle138b in Parkinson´s Disease

MODAG, a German biotechnology company focused on the development of disease-modifying small molecule therapeutics for neurodegenerative diseases, announced the clinical trial initiation of a first-in-patient Phase 1b study for anle138b in patients with mild to moderate Parkinson´s Disease (PD). Anle138b is a disease-modifying treatment option for synucleinopathies, such as Multiple System Atrophy (MSA) and PD.

Find out more on our MSA Treatment Pipeline webpage.