Listen
Dr. Carina Peritore's father was diagnosed with MSA, and that forever changed the trajectory of her career. You can hear her moving personal story on the podcast Vital Science. Dr. Peritore works at Charles River Labs; we have featured their work on MSA in previous editions of this newsletter. We are grateful to her for sharing this very personal story with us.
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Watch
We know that using medications to help MSA patients deal with symptoms is only a fraction of the helpful interventions available. Watch Dr. Thomas Chelimsky, medical advisor of the Coalition board talk about the importance of non-drug therapies such as bed positioning, dietary salt, and water consumption for neurogenic orthostatic hypotension. And don't forget to subscribe to our YouTube channel to be alerted to new video content. |
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Purple-striped zebras and MSA
There's a slogan that says, "If you hear hoofbeats, think horses, not zebras." In other words, look for the most likely explanation first. We in the rare disease community, unfortunately, are the zebras--the ones with the less likely diagnosis.
Our partners at the National Organization for Rare Disorders---NORD---sponsor Rare Disease Day every February, encouraging all of us to "show our stripes."
Those with multiple system atrophy are the even rarer zebra--the one with purple stripes, matching our awareness color.
March is Multiple System Awareness month and now is a good time to consider how we can raise awareness of MSA. Here are a few ideas:
- Wear your MSA t-shirts, bracelets, or purple ribbons every day in March and tell people what they signify. Need some merch? Check our store.
- Have a shirt with purple stripes? Put it on and take a picture. Send it to us and we'll share it during March.
- Share the word on your social media channels. Tell your story! Let your friends know how this disease has affected you. Raise their awareness.
- Add the MSA Awareness ribbon logo to your Facebook profile. Try it out here.
- Write a press release or a letter to the editor about how multiple system atrophy affects your life.
- Start a fundraiser or make a contribution.
- Help us get a proclamation from your state---details in the next article.
- Send us your great ideas---we will feature them in next month's MSA Awareness Month newsletter! And we'd love to share your photos. Send anything you are doing to dadkins@msacoalition.org!
Show your purple stripes!
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Advocate
Since 2013, the Coalition has partnered with MSA NJ in an effort to have all 50 states proclaim March as MSA Awareness Month. These proclamations can be of great help; press releases, sharing on social media, and talking about the proclamations to local officials all help to shine a spotlight on MSA during March.
How can you help? MSA NJ has everything you need available on their website, including step-by-step directions on how to request a proclamation and sample letters to use. It's easy! Check it out! And thanks to Kym and everyone at MSA NJ for their leadership on this initiative!
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Hope
Larry Kellerman, Coalition board member who spends many hours listening and sharing with others via our hotline, shared his vision of starting this new decade with hope in a recent blog post on our website. Read this moving and inspirational post here. |
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New Study Recruiting Patients
Stony Brook University is recruiting participants for a clinical research study which will attempt to identify biomarkers. Please consult the poster to the left. More information is available on ClinicalTrials.gov.
To understand what is involved in participation in clinical trials, check out Dr. Daniel Claassen's presentation at our most recent conference.
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We are so grateful to all who supported the mission of the MSA Coalition with financial gifts in 2019. Here are some of the things your contributions make possible:
- Assistance to patients and their families with information and guidance. Our board members spend many hours on the telephone with patients and caregivers, staying in touch over weeks and months to provide encouragement and a listening ear. We connect them with sources of information, mailing packets and emailing links. Nothing is more important to us than helping MSA families. We have walked this path too.
- The Patient and Family Conference. Each year researchers and medical professionals make presentations that provide real-world assistance and valuable information to people whose lives have been impacted by multiple system atrophy. For those who are unable to travel, we live-stream the conference and make the sessions available for viewing online.
- Support for researchers in the early stages of their career so that they will be interested in working on this devastating neurological disease
- Funding assistance for vital research that we hope will one day lead to improvements in diagnosis and treatments -- and eventually a cure
- Producing educational materials such as our new edition of MSA: What You Need to Know.
Many of you gave to the cause on Giving Tuesday and during our Holiday Hope for a Cure campaign. As we move forward in the new year, please consider a gift during MSA Awareness Month, and reach out to your own contacts to invite them to support the mission, too.
Thanks to you, we are making a difference! |
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