Happy 50th, MSAA, and Thanks for Raising MS Awareness
This week in social media, I ran across a link to the article, “The Coronavirus and MS: What You Need to Know.”1
Reviewed by Chief Medical Officer Barry A. Hendin MD of the Multiple Sclerosis Association of America (MSAA), it provides a frank MS-centered overview I totally appreciated.
It also reminded me that 2020 marks the MSAA’s 50th anniversary.
I know they’ve helped me get a handle on my own MS more than once, so I’m going to shine a kind spotlight on this organization and all the good it does for people with MS.
From grassroots to national advocacy
The MSAA has grown from a small grassroots nonprofit to a nationally well-known and respected advocacy group for people with MS.
They operate several ongoing core programs that we can all benefit from:2-10
- MSAA Helpline: This toll-free service [(800) 532-7667] allows you, your family members, caregivers, and friends opportunities to speak directly to a specialist about a wide array of topics. Call weekdays 8:30am to 5:00pm EST; extended hours occur Wednesdays until 8:00pm.
- They publish The Motivator twice annually in print and online. In its eighth year of circulation, you can read current issues or download PDFs from their archives.
- Their Equipment Distribution Program provides assistance products for safety, mobility, and independence for all who qualify. Apply online or through the mail.
- The popular MSAA Cooling Distribution Program connects people to wearables that help manage one’s core body temperature. (Also applied for online or through the mail.)
- If you need assistance paying for brain and spinal MRIs, the MRI Access Fund provides support thanks to donations from Biogen and Sanofi Genzyme. The MSAA can connect those who qualify with imaging centers they’ve contracted to perform MRIs for the newly diagnosed. Look for other payment benefits and application forms at the website.
- If you’re a swimmer, you might already know about their signature fundraising event, Swim for MS, a self-directed program they’ve recently enhanced with new features.
- One of my favorite of the nonprofit’s offerings, now in its tenth year: the annual MSAA Art Showcase. They feature MS artists of the month to follow, learn from, and be inspired by.
- Don’t forget their extremely useful portal for Prescription Assistance, and the useful MS Relapse Resource Center which can help you master the challenges of relapse through an online library of tools and media.
More “twentieth century” efforts by the MSAA make this organization relevant for so many.11-15
- You can find the My MS Manager app for both iOS and Android smartphones. Use it to track medications and symptoms, chronicle your experiences, print resources, and more.
- While the MSAA podcast is fairly new, it’s a worthwhile program for accessing information, community, and inspiration.
- You’ve probably read posts from MS Conversations, the award-winning multi-authored blog. It’s a great place to start if you want to learn more about the organization.
- My MSAA Community provides all the comforts and resources of an online forum. This can be one of the best ways to connect with your MS peers, learn more about research, or ask for tips for symptom management or mitigating relapses.
- The MSi caches useful on-demand videos, webcasts, and webinars. This digital library makes learning especially convenient when you can’t leave the house or have a challenging schedule.
How they’re celebrating
The MSAA launched a fun project, the “50/50 Challenge earlier this year. They asked readers to create two separate 50-word “word clouds” to help them kick off their anniversary year. Hundreds of readers responded. Two graphics, “Improving Lives Today” and “Building Up Hope,” resulted, capturing the inspiration behind their ongoing mission to support people with MS.
For 2020, the MSAA’s MS Awareness Month theme, “The Mind, Body, and MS Connection” seems all too relevant! It focuses on the many ways we can take charge of managing daily wellness efforts like exercise, nutrition and lifestyle choices.
The Improving Lives Benefit to highlight the MSAA’s 50th Anniversary year, slated for April, has been postponed until fall due to the coronavirus pandemic.17 The MSAA benefit coordinators expect to set a new date by the end of March 2020.
But don’t let this stop you from dropping by one of their online access points—visit their Facebook group, Twitter feed (@MSassociation) and online forum and them know how much you appreciate their hard work, practical support, and equitable representation of people with MS.14,18-19
Who can relate? "Just because I could do something last year, last month, last week or yesterday doesn’t mean I can do it today. Also, it doesn’t mean I can’t."