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MSA Coalition Newsletter - December 2021
December 2021 Newsletter

End-of-Year Fundraising Updates

First off, we want to thank all of you for your involvement and contributions to our year-end campaign. Your support and dedication to our organization is essential to the work we do at The MSA Coalition.

A special thanks goes to all our Circle of Hope donors who have pledged over $150,000 to match the donations of our other community members. We also have an outstanding group of fundraisers to thank who have created their own fundraising pages to share with their personal network.

"Struggling for a life with MSA has been a rollercoaster ride, for years working to find a diagnosis and then a year of relatively good days. Whoosh! The bottom drops out, and the symptoms come so fast and jerk you around you cannot breathe. I am so grateful for the support, advocacy and resources I received when I found my first MSA Coalition Facebook group. There were other people like me! Every year since, I have participated in fundraising knowing without those donations they could not fund research programs, build awareness, or support patients with information they so desperately need to cope and have hope." - Belinda Franklin

The support and donations we receive allow us to provide services to our community members like Belinda, and we still need your help as we approach the end of the year. On top of your donation, there are still available matching funds in the Circle of Hope Champions fund, so your donation will be doubled!


How Can I Help?

Make a Donation:
Start a Fundraiser for MSA:

Help us build hope as we finish out 2021!

A Fond Farewell and Thank You to Don Crouse
At the end of this year, our Vice Chair, Don Crouse, will be stepping down from his position on The MSA Coalition Board of Directors, and we want to highlight some of the wonderful work he has done for our organization and the MSA community. Don has dedicated over 20 years to The MSA Coalition and was instrumental in advancing the organization from a support group to an official 501(c)(3) nonprofit.
   
We cannot thank Don and his wife Geri enough for the support they have given over the years. We wish them the best in this new phase of their lives. 
Patient Perspective: A Gift of Encouragement
MSA Coalition Board Member and Patient Representative, Cathy Chapman shares a touching message from a kind stranger with her MSA family.

Read More
Care Partner Corner: The Gift of Being Present
Elaine Douglas, MSA Coalition Board Member, reflects on ways to be a present care partner and shares how care partners can be more mindful as they care for their loved ones.

Read More

Seeking Participants for MSA Genetic Study

The Multiple System Atrophy Coalition is working with the Translational Genomics Research Institute (TGen), a nonprofit medical research center, on a research study to better understand the genetic makeup of Multiple System Atrophy. We are seeking patients and their families to donate blood drops and saliva.

Learn More

Treatment Updates in MSA Pipeline

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

  • Lundbeck launches a phase II study for potential new treatment of multiple system atrophy
  • The Compound ATH434 Prevents Alpha-Synuclein Toxicity in a Murine Model of Multiple System Atrophy
Read more on our MSA Treatment Pipeline webpage.

Non-Pharmaceutical Study Updates

Various non-pharmaceutical studies are being conducted with MSA patients to determine if they can measure symptom progression, differentiate MSA from other similar diseases or improve quality of life. Included are Natural History Studies, Biomarker Assays, Speech Therapy, Occupational Therapy and Physical Therapy studies.

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Dr. Wolfgang Singer Named Bishop Golser Awardee

The Scientific Advisory Board of the Bishop Karl Golser Foundation has named Dr. Wolfgang Singer the 2022 Awardee, sponsored by The MSA Coalition, for his recent breakthrough discoveries of CSF synuclein biomarkers in MSA patients. 

Dr. Singer is the attending neurologist and Associate Professor of Neurology at The Mayo Clinic in Rochester, MN and director of Mayo’s autonomic laboratories.
He has a broad clinical interest in autonomic disorders with a research focus on neurogenic orthostatic hypotension and the synucleinopathies, especially multiple system atrophy (MSA).

His many contributions to the MSA field range from studies on the natural history of MSA, to disease biomarkers, and therapeutic trials. His recent work on alpha synuclein protein misfolding cyclic amplification techniques and neurofilament light chain in the spinal fluid as potent biomarkers differentiating MSA from other parkinsonian disorders was internationally acclaimed. This exciting work is ongoing and in the process of being further extended and supported by NIH and FDA grant awards.

 
Congratulations to Dr. Singer! The MSA Coalition and
our community are so grateful for your research for MSA.

Meet Our Fundraising Champion Austin Urban, Organizer of Miles for MSA

In 2019, Austin along with his family received the news that his father, Jon, was diagnosed with MSA. Determined to support his father, Austin began organizing Miles for MSA runs to raise awareness and research funds. His dedication to helping his father as well as the MSA community is inspiring, and he has raised thousands of dollars for The MSA Coalition.
 

Congratulations Austin Crawford on Winning Best Documentary!

Austin Crawford, MSA Coalition General Advisory Council Member, has been raising awareness of MSA through his documentary Fighting MSA Austin Crawford's Story. His documentary was recently recognized as Best Documentary in the Assurdo Film Festival. Congratulations for this wonderful recognition, Austin. Thank you for sharing your journey with the world!

Read More

Holiday Shopping for a Loved One with MSA

Because we are in the midst of the giving season, we wanted to share some ideas for holiday shopping for a loved one with MSA. Check out a couple options below:
  1. Purchase gifts from The MSA Coalition Online Store. Proceeds from these purchases go toward MSA research efforts and patient and family support.
  2. These smart home devices can enhance independence for people with disabilities and mobility needs and would make great holiday gifts.
You can also give to The MSA Coalition with your Amazon purchases through the Amazon Smile program.

Learn More

Join Google and LSVT in Project Euphonia 

Google has launched Project Euphonia in partnership with LSVT with the goal of making speech recognition more accessible to people with speech disorders. To do this, they need samples of disordered speech to train their system. LSVT Global is recruiting people with speech disorders to help. Upon completion of the project, participants will receive a $60 gift card from Google.
 
They are looking for participants with Parkinson’s disease (PD), PSP, MSA, CBD, post DBS or Tremor with mild, moderate, or severe speech disorders.
 
How Can You Help?
You record samples of your speech online in the comfort of your home, with the assistance of an expert speech clinician.

For questions, contact project.euphonia@lsvtglobal.com.

Register Here

Cares Act Tax Contributions to Non-profits

The Cares Act, as extended into 2021, allows taxpayers who do not itemize to deduct up to $300 per person (a total of $600 per married couple) of cash contributions to qualified non-profits like The MSA Coalition. Contributions must be made in cash or by check; stock or DAF contributions are not eligible. This provision will expire at the end of 2021, unless it is extended by congress.

For those who do itemize, The Cares Act increases the limit on deductions of qualified contributions from 60% of adjusted gross income (AGI) to 100% of AGI through 2021. Taxpayers should consult their tax advisors for additional information.

The MSA Coaltion Named 2021 Top-Rated Nonprofit

The MSA Coalition has been honored with a Top-Rated Award for 2021 from GreatNonprofits! We are so appreciative of the support and contributions from our MSA community. 

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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