The MSA Coalition Newsletter - January 2022
January 2022 Newsletter

End-of-Year Fundraising Recap

2022 is finally here, and we are so thrilled by the support we received throughout our End-of-Year Fundraising Campaign these past two months!

We are sending the warmest thank you to each and every one of our donors. From the bottom of our hearts, we are extremely thankful for our wonderful community and your dedication to our four pillars: research, education, support, and advocacy.

A special thanks goes to all our Circle of Hope donors who pledged 
$163,662 to match the donations of our other community members.

We're still in the process of tallying up all the donations that came in over the past two months, and we will share the news with you all when we've finalized the numbers.


Thank You for Helping us Build Hope for 2022!

Welcome Our New MSA Coalition
Board Members!

Prof. Gregor K. Wenning has served on The MSA Coalition’s Scientific Advisory Board from 2013 to 2021, culminating his service with a two-year term as Chairman, and was recently elected to The MSA Coalition Board of Directors.

Prof. Wenning is the director of the Dysautonomia Center and chair of the Division for Clinical Neurobiology at Innsbruck Medical University. Following medical studies as scholar of the German National Scholarship Foundation, he generated the first MSA mouse model during his PhD studies at the University of London, which has gained international attention.

As Co-Founding Director and Coordinator of the European MSA Study Group, Prof. Wenning leads a consortium of 28 MSA centers in Europe and Israel, with the goal of driving forward accurate diagnostic markers and translational therapy research.

Combining clinical and basic research, Prof. Wenning’s goal is to find a cure for people affected by Multiple System Atrophy. With over 300 peer-reviewed articles and book chapters published on MSA, Prof. Wenning’s impact on the field of MSA research is unparalleled.

As chair of the Movement Disorder Society Taskforce on the Diagnosis of Multiple System Atrophy, Prof. Wenning is currently leading efforts to revise the consensus criteria on the diagnosis of MSA in order to affect earlier and more accurate diagnosis of MSA which will greatly expedite clinical trials for this devastating disease.

Prof. Wenning will be speaking on "New MDS criteria for clinical diagnosis of MSA" on a February 15th webinar. Learn more and register here.
We are thrilled to welcome Prof. Wenning's expertise to our board in 2022!

Adrienne Glusman is a professional speaker, ambassador and advocate on the topic of Millennial Caregiving and just joined The MSA Coalition Board of Directors in 2022. Adrienne’s speaking engagements focus on sharing her story and journey as an only-child caregiver to her mom, Hetty, who passed away in 2020 after living with Multiple System Atrophy since 2010. Adrienne’s story as Hetty’s caregiver was featured in a Wall Street Journal article, ‘The Call To Care for Aging Parents Comes Sooner Now.’ Her story has also been featured in Health magazine, Toronto Sun and to name a few. In addition to keynoting national conferences for Leading Age, National Church Residences and The Multiple System Atrophy Coalition, Adrienne has also been involved with various caregiving campaigns including serving as a caregiver ambassador for EMD Serono’s Embracing Carers, Leading Age’s ‘Carry the Convo’ and The Scan Foundation’s ‘Do You Give a Care’. You can follow her on Instagram and Facebook @younglifeinterrupted, or subscribe to her podcast, Young Life Interrupted, where she is lending a voice to her journey so other young caregivers can feel seen, heard and supported. 

Welcome, Adrienne! You will be a wonderful resource to our MSA community.
Get acquainted with the rest of our board members!
The MSA Coalition Board of Directors
Patient Perspective:
A Canine Hero: The Day My Dog Saved My Life

Tim Keenan took his dog out for a morning walk one Sunday when a frightening accident occurred. Luckily, his best pal and 'furrever' friend Sammy was there to save the day.

Read More
Care Partner Corner:
Care Partner Logistics to Start the Year Off Right

Carol Langer, MSA Coalition Treasurer and former care partner, shares ways to be more organized and efficient in caring for a loved one with MSA as you start the new year. Read her blog and make sure you've got all your bases covered.

Read More

Research Webinar: February 15, 9am ET

Register for the ERN-RND webinar featuring The MSA Coalition's Professor Gregor Wenning. This webinar will have two parts, one on 'MDS criteria for diagnosis of MSA' to be presented by Professor Wenning. The other part entitled 'Introduction and critique of the Gilman criteria' will be presented by Iva Stankovic, a Neurologist at the Institute of Neurology, University of Belgrade, Serbia.

Note: This webinar is open to all audiences but is geared toward medical professionals. Topics covered will be technical. We strongly encourage patients to tell their doctors about the webinar and share the registration link so they are well informed about the latest news. This webinar will be recorded and made available afterward. Look out for distribution of this recording in future newsletters and through our social media channels.

Register Here

Medical Market Research on Multiple System Atrophy (MSA)

Clarion Healthcare, a Boston based life sciences consulting firm, is currently conducting 60-minute Zoom interviews with patients and caregivers of patients with MSA. The purpose of this research is to understand the journey and experience of patients and caregivers living with this condition on behalf of a pharmaceutical company interested in developing a treatment for MSA. This research will be taking place between now and mid-February; participants will receive $100 compensation paid by check for their time. The conversation will include:
  • The process of seeking and obtaining diagnosis
  • The decision-making process and decisions around treatment and management of MSA
  • The impact of MSA on patient quality of life
To be considered for this interview, respondents should be patients diagnosed with MSA or caregivers of patients diagnosed with MSA. Respondents must also be able to conduct this interview in English and have access to a computer in order to join a Zoom call.

If you would like to participate in this study, or would like any additional information, please contact Jenny Peterlin at

New Clinical Trial Opportunity: A Study to Evaluate Mesenchymal Stem Cells to Treat MSA

Principal Investigator, Dr. Wolfgang Singer, MD states: "The focus is on early disease, and specifically on patients who are still able to walk unaided. We are actively screening for the study, and anyone interested should contact us at We carefully screen and get back to every patient."

IMPORTANT: Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff via the contacts provided at the clinical trials website: or

MSA Coalition Selected for NFL’s My Cause, My Cleats Campaign 

For the second year in a row, Washington Football Team player Jonathon Bostic has selected The MSA Coalition as his cause for the annual NFL national awareness and fundraising campaign "My Cause, My Cleats."

The NFL website explains how "players reveal their passions beyond the game and wear their hearts on their feet through 'My Cause My Cleats.' Players have the opportunity to pick a cause that is important to them and represent their chosen organization on custom designed cleats."

The initiative encourages NFL players to use this event to raise awareness for a myriad of different charities.

Thank you to Jonathan for helping
raise awareness of this rare disease!

Leave a Review for The MSA Coalition on

Help us earn our 2022 Top-Rated GreatNonprofits badge by sharing your story and experience with The MSA Coalition on our profile.

Your feedback and recognition allows us to continue to serve the MSA community and provide helpful resources to those impacted by MSA.

Share Your Experience

"Coach Mike 'Papa' Brown MSA Scholarship Fund" to
Donate 10% of 2021 Funds Raised to MSA Coalition

In June 2021, a beloved member of our community, Coach Mike "Papa" Brown passed away after a tough battle with MSA. As an English teacher and basketball coach for Albuquerque Public Schools, he made a lasting impression on his students and will be dearly missed by the community.

In his memory, the Brown family is honoring Papa’s legacy with the Coach Mike Papa Brown MSA Scholarship Fund in support of student athletes within the Albuquerque Public School District.

The scholarship fund will also being donating 10% of scholarship funds raised in 2021 to The MSA Coalition!

Thank you to the Brown family for supporting our organization. We will continue to honor Coach Mike "Papa" Brown's legacy through our dedication to ending MSA!

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

Register Here
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!

For assistance and a listening ear,
call: 866-737-5999

Give to The MSA Coalition with your Amazon purchases through the Amazon Smile program.

Learn More
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