Copy
MSA Coalition Newsletter - March 2021

March is Multiple System Atrophy Awareness Month!
Every March is designated as Multiple System Atrophy Awareness Month and provides the opportunity to educate the world about this rare and fatal neurodegenerative disorder. By raising awareness of MSA, we can help improve early diagnosis, encourage policymakers to increase access to services and fund research into MSA, as well as reduce the feelings of isolation faced by patients and caregivers.
 
During Multiple System Atrophy Awareness Month, we’ll share many opportunities for you to Shine a Light on MSA. The MSA Coalition will provide daily suggestions on ways to share your story, tell more people about MSA, and learn from other people in the MSA community.

#MSAAwarenessMonth    #ShineALight    #MultipleSystemAtrophy
 
Visit our website to find out more about how you can Shine a Light on MSA… every day during MSA Awareness Month.

Suggestions for Friends & Family
Family and friends of a loved one suffering from MSA want to support them and their family, but often find it difficult to know how to help. Because MSA is so rare, most people don’t know much about the disease or its effects on the patient and family and, as a result, family and friends may be at a loss as to how best to engage with and support the family.

Most people are well meaning and truly want to support you through your MSA journey. Give them a chance to help by gently guiding them with suggestions of things they can do. Finding solutions to this problem is a win-win for everyone, the MSA patient, their care partners, as well as their family and friends.

Our new “For Friends & Family” webpage includes some ideas that you — the MSA patient and family — can share with your family and friends who ask how they can help.

Read more
 

Shine a Light on Your Family
 Expanding awareness of MSA is important, and so is expanding awareness of your personal reality. As caregivers, we often feel that we, alone, need to take on all the responsibilities for meeting our loved one’s needs. It’s easy to become isolated, particularly as the disease progresses. And isolation will not help you live your best lives. We probably can do it alone, but we shouldn’t. This month, consider making a commitment to expanding awareness of your situation – we have some tips to start the conversation.
 
Read more

A Message from Hadley Ferguson, Patient Representative, The MSA Coalition Board of Directors
It has been an honor and a pleasure to serve as the Patient Representative on the MSA Coalition Board for the past several years. I am grateful to the Coalition for creating this position as the patient’s perspective and voice is so important as we continue to expand our knowledge through research and in the planning of programming and educational materials. 

Read more from Hadley here

Watch the Webinar:
COVID-19 Vaccine Updates and Considerations for MSA Patients

On February 5, the MSA Coalition and the UT Southwestern Medical Center presented the webinar COVID-19 Vaccine Updates and Considerations for MSA Patients. We discussed the vaccine, timing, associated risks, and special considerations for people with MSA. This webinar is available to view on-demand. 
 
Click here to watch the webinar.
Give Now to Shine a Light on Multiple System Atrophy
The MSA Coalition Research Grant Program Webinar
Larry Kellerman, PhD, interviewed Dr. Wassilios Meissner & Dr. Annamaria Vallelunga to discuss A serum miRNAs signature as a potential biomarker for MSA.
 
Click here to watch the webinar.
 
MSA Coalition Announces 2021 Call for Research Proposals
Attention Researchers: The Multiple System Atrophy Coalition requests pre-proposal grant applications for research relevant to the improved treatment of Multiple System Atrophy. Applications are accepted from anywhere in the world. Maximum seed grant amounts up to $50,000 for a one-year term with option to renew upon satisfactory review and submission of a year 2 research plan.   

Full details and the pre-proposal template are available at our website.
Biohaven Shares Verdiperstat’s Mechanism of Action
Biohaven recently shared this graphic of the mechanism of action of Verdiperstat, their candidate drug for the potential treatment of MSA. A phase 3 clinical trial for Verdiperstat is currently in progress though new enrollments are no longer being accepted. For more questions and answers about Verdiperstat from Biohaven please refer to the MSA Coalition website.

Watch the MSA Coalition’s Presentation at 7th International Congress of MSA
As part of its commitment to promote global awareness and research on multiple system atrophy, the MSA Coalition was the Platinum Sponsor of the 7th International Congress of Multiple System Atrophy, hosted by the University of Tokyo and held virtually February 26 – 27. The MSA Coalition Board members Cynthia Roemer and Pam Bower presented the session “MSA Advocacy & Research Directions.” 

Watch the presentation here.
 

2021 Global Multiple System Atrophy Advocates Consortium Meeting
On February 27 in conjunction with the 7th International Congress of MSA, the MSA Coalition hosted the 2nd Global MSA Advocates Consortium, building on the work we started in 2018. This year, we were delighted that the MSA Trust joined us in leading the conversation. The meeting was held in two sections to accommodate participants from fourteen established groups from around the world and multiple time zones. Great progress was made on setting up mutually beneficial and respectful collaboration and sharing of resources to benefit MSA patients around the world.
 
All of the meeting attendees would like to thank Professor Shoji Tsuji for his generous help in organizing the advocates meeting and offer congratulations for hosting a successful International Congress of MSA, a meeting that brought together MSA researchers from around the world to share the latest research findings and learn from each other. The live Q&A sessions with expert presenters provided opportunity for lively debate and discussion. The spirit of collaboration was apparent as many of the presenters offered to work together on new projects to advance their understanding of MSA. 
 
MSA NJ Announces March Webinar Series Open to All
This year, in lieu of its annual in-person conference held each March, MSA NJ will be hosting weekly webinars each Saturday throughout the month. This series, in recognition of Multiple System Atrophy Awareness Month, will cover some of the most requested topics. Everyone is welcome; registration is not limited to NJ/NY but space is limited.

Visit http://www.msanj.org/msanj-virtual-conference/ for more information and to register.  

Give Now to Shine a Light on Multiple System Atrophy
Who We Are; What We Do
Do you ever wish you had a clear statement of what the MSA Coalition is and does?  Your wish is our command – check it out here!
Call us for assistance and a listening ear: 866-737-5999
Twitter
Facebook
Website
Copyright © 2021 Mission MSA, All rights reserved.


Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

Email Marketing Powered by Mailchimp