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The MSA Coalition Newsletter - February 2022
February 2022 Newsletter
Introducing Our New Executive Director,
Joe Lindahl, MA, CAE!
At the beginning of last month, we welcomed a new Executive Director, Joe Lindahl, MA, CAE, to our team, and we are thrilled to have his expertise and leadership!

Joe brings strong experience to this role having served as the executive director for several associations in the medical and research fields. As executive director, he will lead the Coalition’s professional team and work with the Board of Directors to support their mission of improving the quality of life and building hope for people affected by MSA.

We're excited to see how his ideas and leadership will transform our organization and help us provide support to our community!

Learn More
3 Ways You Can Prepare for
MSA Awareness Month, March 2022!
Multiple System Atrophy Awareness Month is next month! We have some exciting plans for spreading awareness of MSA, and you can get involved.

Here's a taste of what's to come next month:
  • Weekly prize giveaways!
  • Photo/Story Contest
  • Attend events hosted by medical experts and patients
  • Access to new educational resources
  • and more!
We'll be sharing more details in the coming weeks, but in the meantime, here are ways that you can prepare for next month!
  1. Like and Follow our Facebook Page
    We will be sharing events, resources, and updates throughout March on our Facebook page. Make sure you are following our page so that our updates appear in your newsfeed!
     
  2. Follow us on Instagram
    Did you know our organization has an Instagram account? Make sure to follow us, and see photos of our community members along with other updates for MSA Awareness Month!
     
  3. Get Some MSA Coalition Gear!
    Place your orders now so you are ready to represent the Coalition in March! Choose from t-shirts, hoodies, baseball caps, face masks, coffee mugs, and more:
    Shop Teespring (Note: scroll down the page to view other products)
    Shop AuthenticMerch

We can't wait to see our community engaging with each other and spreading awareness of MSA to their own communities next month!
Patient Perspective:
Having MSA Does Not Define You: Reconnecting with Your Sense of Self after Diagnosis

After an MSA diagnosis, it may feel like the disease has taken over your life, but Cathy Chapman, MSA Coalition Patient Representative, reminds patients that they are more than their disease. Read her words of encouragement and advice.

Read More
Care Partner Corner:
Long-Distance Caregiving: When Your Loved One with MSA Lives Far Away

Most of us imagine a care partner as someone who lives with the patient and handles day-to-day caregiving, but this is not always the case. Our MSA Coalition Care Partner Representative, Topher Schott, shares his experience of being long distance from his mother with MSA and how he cares for her.

Read More

Research Webinar: February 15, 10am 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 jpeterlin@clarionhealthcare.com.

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
Our fundraising team is still working diligently to tally up all the generous donations we received at the end of 2021, but we'd like to share an update about our Circle of Hope Champions Matching Fund.
 
Circle of Hope Champions pledged $182,089 in 2021!

This is a 55% increase in pledges from 2020 when our fund totaled $117,165. Our champions raised the bar this year and are setting us up for more opportunities to support those affected by MSA.

Liz Dyas, Board Member and 2021 Circle of Hope Champion, shares why she donates:
Our family contributes to the Circle of Hope Matching Fund because we believe that it encourages others to make donations that will then be matched—increasing the overall impact of said donations! The more funds we raise for MSA, the closer we are to a cure and treatments. In honor of our mother and wife Eileen, we value the work The MSA Coalition does to support research and education while also building out the community for those living with MSA.

Show Your Stripes for Rare Disease Day, February 28th!

Rare Disease Day raises awareness of the over 7,000 rare diseases that impact over 300 million people globally! The National Organization for Rare Disorders (NORD), EURORDIS (Rare Diseases – Europe), and others all around the world drive an international campaign that shines a light on rare diseases and advocates for health equity for all those living with a rare disease.

Multiple System Atrophy is one of those rare diseases. Show your support for NORD and rare disease awareness by wearing stripes on February 28th!

Learn More Ways to Get Involved!

The MSA Coalition Receives Platinum Seal of Transparency

We are happy to share that Candid has awarded The MSA Coalition with the Platinum Seal of Transparency! We are so thankful for this recognition.

Check Out Our Profile

Leave a Review for The MSA Coalition on GreatNonprofits.org

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

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
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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