Updates, blogs, and resources from the Multiple System Atrophy Coalition
MSA Coalition Newsletter - August 2021
New Opportunities at 2021 Multiple System Atrophy
Annual Patient & Family Conference
The 2021 Multiple System Atrophy Annual Patient & Family Conference will take place virtually September 30 – October 2, in partnership with the Mayo Clinic in Rochester, Minnesota. The MSA Coalition has put together an outstanding program built around our expert speakers, relevant session topics, and new approaches to virtual learning. This year’s conference will have many new opportunities to connect with others living with MSA and learn about this disease.
MSA Coalition Week, September 20 – 24
View on-demand videos to learn how the MSA Coalition can provide you support and education, participate in Support Group discussions, explore the MSA Coalition Lounge, meet our exhibitors.
Community Partners Week, September 27 – 29
Find additional sources of support and education from our partners, including the Mayo Clinic, MSA NJ, MSA Belgium, ARAMISE, Brain Support Network, and the MSA Trust.
Virtual Conference, Thursday, September 30 – Saturday, October 2
Education sessions presented by medical professionals, healthcare experts, and care partners. Networking receptions and activities to help you “Live Better With MSA,” and more!
Registration is opening soon!
We’ll send out registration information later this month.
Patient Perspective:
Wisdom Gained, Lessons Learned, and Coping Tips
Sharron shared her story in a blog last month. Now she tells more of her personal story and offers practical advice for MSA patients.
Music Therapy for MSA
Music engages multiple areas in the brain involved in emotions, cognition and motor function. It has been shown that Singing Music Therapy can improve breathing control and exercise vocal muscles that affect swallowing and speech. Also, creating your own personal collection of songs that bring joy, relaxation and special memories is another way to start your music therapy.
Practice Saying “Your Choice”
Dignity is one of the most important aspects of being human. Simply, dignity is about being seen, heard, and acknowledged for who we are and treated in a way that recognizes our worth. The realities of having MSA can threaten a person’s sense of dignity. As care partners, we have a key role in helping our loved one maintain their sense of dignity.
Treatment Updates in MSA Pipeline
Many promising treatments are currently in development for MSA. A new update on the testing and funding of new drugs was recently issued:
New Publication Demonstrates ATH434 is Neuroprotective
Research Project Seed-Funded by MSA Coalition Receives Additional Funding
A research project seed-funded by the MSA Coalition was awarded additional funding of 100,000 Euros from the Dr. Johannes and Hertha Tuba Foundation. The project investigates whether wearing an abdominal bandage can prevent spontaneous drops in blood pressure which can often lead to falls and serious injuries.
Studies show only 30% of Americans have a will, so National Make-A-Will Month is a good time to make sure you have a will or that your will correctly reflects your wishes. We encourage you to consider including a bequest to the MSA Coalition in your will, and we offer many Planned Giving Resources.
Double Your Donation
If you are donating to the MSA Coalition, your employer or your spouse’s employer may match your gift. Many companies make matching gifts, often dollar for dollar, to encourage their employees to donate to worthy causes. Visit our Matching Gifts page where you can follow easy steps to see if you can double the impact of your donation.
