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MSA Coalition Newsletter - October 2021

Thank You for Attending Our 2021 Conference!

This year's Annual Patient & Family Conference came to a close on Saturday, October 2, and we are so thankful for the participation and support of our host medical facility The Mayo Clinic, our sponsors and community partners, and, of course, our attendees! 

With so many amazing presenters, speakers, and medical experts contributing to this event, we hope our attendees left feeling inspired, connected, and more knowledgeable.

Recordings of conference sessions will be posted to the MSA Coalition YouTube Channel in the coming weeks. Make sure to subscribe and get notified when the videos become available.

Read our conference recap press release for more details.

Observing World MSA Day
October 3rd was World MSA Day, and we asked our community to share their stories, memories, and photos of loved ones impacted by MSA. Thank you to those who participated and shared photos and dedications on our Facebook post. We hold the memories of those lost close to our hearts, and we will continue to support our community as we strive to cure this disease.
Patient Perspective:
Thankful for Another Day to Fight

MSA Patient Betty Martin describes her diagnosis journey in this short and poignant blog and shares words of wisdom and perseverance with those who have been impacted by MSA.

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My Positive Experience with Hospice Care
Dr. Larry Kellerman, MSA Coalition Board of Directors shares his experience transitioning his wife to hospice care and explains how hospice care can benefit both the patient and caregiver. 

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Announcing Groundbreaking Project to Explore the Genetics of Multiple System Atrophy

We are excited to announce a ground-breaking million-dollar multi-year collaborative project focused on exploring the genetics of people diagnosed with MSA. Read the full press release and watch the video where Vikram Khurana, MD PHD and Scientific Liaison, MSA Coalition Board of Directors, announces The MSA Coalition’s grantees and provides detail on their research projects.

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Announcing 2021 Global Seed Grant Awards

Pam Bower, MSA Coalition Board of Directors Secretary and Research Committee Chair announces the grantees of the 2021 Global Seed Grants and provides details on these six new projects as well as background on the purpose and impact of the seed grant program.

Watch Now
 

Treatment Updates in MSA Pipeline

Several pharmaceutical companies and research institutes have shared updates for potential MSA treatments in the last month:

  • Theravance Biopharma, Inc. announces results of phase 3 Ampreloxetine study
  • ICBII announces approval of seventh patent on blood-brain barrier permeable technology
  • Inhibikase Therapeutics receives grant from U.S. National Institutes of Health to evaluate IkT-148009 for treatment of MSA
  • Biohaven provides update on phase 3 trial and MSA Program
  • Florey Institute of Neuroscience and Mental Health publishes research funded by MSA Coalition
Find out more on our MSA Treatment Pipeline webpage.

Action Alert: Ask Congress to Protect the Orphan Drug Tax Credit

The MSA Coalition recently signed on to letters sent by the National Organization for Rare Disorders (NORD) to House and Senate leaders opposing proposed changes to the Orphan Drug Tax Credit. The new provision would negatively impact the ability of rare disease patients to obtain an FDA approved drug that has been proven to be safe and effective for their specific condition. 

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Global Genes Designates MSA Coalition Chair, Cyndi Roemer as Rare Leader

Global Genes, an organization that provides information and resources to communities affected by rare disease, interviews Cyndi Roemer, MSA Coalition Board Chair, and has recognized her as a rare leader. Read her full interview and learn more about her involvement in the Coalition and her approach to leading a successful, mission-driven organization.

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7th Annual Kurt Williams Memorial Virtual Run, October 16

Our partner organization, Move Over MSA, is hosting its 7th annual fun run to raise awareness and research funds for this disease. In memory of Kurt Williams, beloved father and friend, the organization will donate its proceeds to the MSA Coalition. Join in, if you are able, and support this wonderful cause virtually.

Register Now

MSA Coalition Sponsors MDS Virtual Congress 2021

The MSA Coalition was a bronze level sponsor for the International Parkinson and Movement Disorder Society's MDS Virtual Congress 2021. This year's congress was the Society's biggest to date with over 13,000 registered attendees representing over 143 countries.

Movement disorder specialists are expert neurologists who are the most likely to diagnose and treat diseases like Parkinson’s and MSA. Those who attend the annual MDS Congress hear the latest updates about MSA from medical experts, which is why the MSA Coalition is there to represent the community and stay up to date with research findings in movement disorders.

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Thank You Pam West for Organizing a 3K Walk for MSA!

If you are interested in holding your own fundraiser, check out these fundraising tips!
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
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