Program Notes: MSAA Expands Services and Support During the Pandemic

By Peter Damiri

Expanded Core Services

As you may have read in previous online announcements, MSAA made several revisions to our core signature services in response to the coronavirus pandemic and its impact on the MS community. Most notably, we added a COVID-19 economic hardship waiver to the Equipment and Cooling Distribution Programs and the MRI Access Fund so families experiencing financial crisis due to the pandemic can select this option to qualify if they would otherwise not meet annual income guidelines.

Additionally, certain application documents are now optional if individuals cannot connect with their physician due to concerns or limitations in traveling to medical appointments. All three programs now offer online applications (new for the MRI Access Fund) and the option of downloading the forms from our website to mail or fax to MSAA.

We are pleased to report these changes have resulted in continued program expansion and added support to the MS community. Many clients have shared with us their heartbreaking struggles as a result of this ongoing crisis, but also some wonderful words of appreciation for our programmatic changes. In a recent email sent to MSAA, Sarali A. of Georgia wrote, “I wanted to take a moment and thank you for the cooling vest you sent. My husband and I are both unemployed right now with little chance for work on the horizon. Your generosity is uplifting.”

MSAA greatly appreciates these kind sentiments from Sarali and many others. We encourage anyone in need of our core services to apply online at mymsaa.org or call our Helpline for assistance at (800) 532-7667, ext. 154. Also, as a friendly reminder, the MSAA toll-free Helpline has expanded its hours to 8:00 PM Eastern from Mondays through Thursdays. Our trained and experienced Client Services Specialists are here to answer your questions, provide resources, and lend a calm and reassuring voice to people living with MS and their care partners. You can also contact the Helpline Specialists by emailing MSquestions@mymsaa.org or sending a chat question via mymsaa.org/chat.

MSAA would like to thank our supporters who enable us to maintain and expand these vital core services, especially in this urgent time of need. The MSAA Cooling and Equipment Programs are made possible, in part, with support from Biogen, Mallinckrodt, Mylan, and the Virginia T. Dashiell Foundation. The MRI Access Fund is supported by Biogen and Sanofi Genzyme, and the Helpline is funded, in part, by Biogen, Bristol Myers Squibb, and Sanofi Genzyme.

African American Advisory Board Update

MSAA’s African American Advisory Board is comprised of several healthcare professionals, individuals with MS, and care partners. As a result of the meeting in 2019, MSAA compiled the feedback from the members and produced a publication titled Multiple Sclerosis and the African American Experience. This publication, along with the list of advisory board members, can be accessed by visiting mymsaa.org/african-american-advisory-board.

The second annual African American Advisory Board meeting includes the healthcare professionals from the advisory board and will be conducted as a virtual meeting this month (October). This meeting focuses on a multifaceted approach to improving the overall care experience of African Americans living with MS, led by the African American MS Work Group.

Content direction and specific recommendations for the proposed interventions will be provided by the African American MS Work Group. This initiative is in partnership with Impact Education.

Outcomes from these meetings will continue to help guide MSAA’s programmatic offerings specific to the African American MS community.

COVID-19 and MS Pathfinder Tool

To help the MS community stay as informed and updated as possible on the coronavirus and its impact on MS, MSAA launched an innovative and informative online tool to navigate through the many issues associated with the ongoing pandemic. Developed in partnership with Wondros, the COVID-19 and MS Pathfinder is designed to enable easy access to your most pressing questions, including:

  • What are the facts about COVID-19?
  • What if I need to stay at home?
  • How do I get what I need?
  • How do I stay safe?
  • How do I stay healthy?

Updated weekly based on the world’s most authoritative sources on COVID-19, this free online tool provides details on research into treatments and vaccinations, potential long-term effects of the virus, symptoms, emergency care, and more. The COVID-19 and MS Pathfinder online tool offers a unique and user-friendly design to access the various topics, while featuring clear and concise explanations of what to be aware of, how to prepare, and whom to contact to ensure your safety and wellbeing. We invite you to explore this amazing new tool by visiting our website at mymsaa.org or you can access it through our free mobile phone app, My MS Manager.

The COVID-19 and MS Pathfinder has been made possible through generous support from Bristol Myers Squibb, Johnson & Johnson, and Novartis.

Wealth of Informative Webinars

Starting at the beginning of the pandemic and continuing for as long as needed, MSAA has launched a series of live, national webinars titled: “What You Need to Know about COVID-19 and MS,” featuring our Chief Medical Officer Dr. Barry Hendin and the Chair of MSAA’s Healthcare Advisory Council Dr. Carrie Hersh. Presented in a very conversational, town-hall style with ample time for audience Q & A, this webinar series is now approaching its seventh live program, scheduled for Monday, October 19th at 8:00 PM Eastern. The previous six programs are archived on our website along with a related MSAA program from June titled “Understanding the COVID-19 Impact on MS in People of Color,” presented by MS expert neurologist Dr. Mitzi Joi Williams.

To date, the COVID-19 and MS webinars have generated more than 5,000 live and archived views with many positive comments from the audience. One such note of appreciation expressed during the exit survey of Program 6 stated: “Learned a lot tonight about risk factors of COVID with various co-morbidities. Appreciate the presenters’ knowledge as well as their very realistic and honest answers about what is known and not known about COVID. Thankful for these great webinars.”

If you have not watched these programs, we invite you visit mymsaa.org/videos to view the archived recordings.

Additionally, MSAA has been actively converting many of our previously scheduled, in-person educational programs, into live, national webinars. Upcoming programs slated for this fall into winter will explore topics that address: being newly diagnosed with MS; how parents can discuss MS with their children; the Hispanic-American MS patient experience; and many other important issues. You can register for these free, live programs by visiting our calendar of events at mymsaa.org/calendar. Also, please know that previous webinars that were broadcast during the summer on topics such as wellness, the African American experience with MS, understanding brain health, and more, are now available for on-demand viewing on the MSi video website page at mymsaa.org/videos.

MSAA strives to keep you as informed, updated, and prepared as possible to manage the ongoing challenges of living with MS, especially during these unpredictable and challenging times. We are thinking of you and your family and are here to help any way we can. Please stay safe and be well!