MS is believed to be an autoimmune condition, in which the immune system mistakenly attacks the myelin sheath that normally protects nerve fibers in the brain, spinal cord, and optic nerve. As the myelin sheath is gradually destroyed, the resulting scar tissue (sclerosis) disrupts the electrical impulses between the brain and other parts of the body. It’s not clear what causes the onset of this immune reaction, although recent research points to infection with the Epstein-Barr virus as a likely trigger. And while there are treatments that can slow the progression of MS, there is no cure. The number of Americans living with MS is estimated at one million, according to research published in March 2019 in the journal Neurology. To raise awareness of the disease, a number of societies and advocacy groups have named March Multiple Sclerosis Awareness Month. It’s a time to bring attention to the current state of research on MS, including new ways to diagnose and treat the condition. Throughout March, you may see orange ribbons adorned with a butterfly symbol. Orange is the official color for MS awareness, and the butterfly represents the shape commonly seen on a magnetic resonance imaging (MRI) scan of a brain of a person with MS. RELATED: Your Everyday Guide to Living Well With Multiple Sclerosis Also of note is the annual Invisible Disabilities Awareness Week, hosted by the Invisible Disabilities Association (IDA), which is held in October.
MS Awareness Week Is March 13–19
As part of MS Awareness Month, MS Awareness Week is held annually in the United States. In 2022, it’s scheduled for March 13–19. During MS Awareness Week, the National MS Society (NMSS) takes a leadership role by focusing on the individual stories of those living with the condition. In sharing tales of the challenges and successes experienced by those with MS, the goal of NMSS is to “help people better understand life with MS and become inspired to do whatever it takes to change the world for people living with” the condition, according to the NMSS website. From 2020 to 2022, the theme for MS Awareness Week is “Connections.” Using the hashtag #MSConnections, members of the MS community are encouraged to share their stories of connecting with themselves, their communities, and their healthcare teams.
World MS Day Is May 30
World MS Day is typically observed on May 30 each year. Established by the Multiple Sclerosis International Federation (MSIF) in 2009, World MS Day seeks to unite the global MS community of more than 2.3 million people “to share stories, raise awareness, and campaign with and for everyone affected” by the condition. Mirroring MS Awareness Week, the World MS Day theme for 2022 is “I Connect, We Connect,” and events focus on building community connections, connecting with oneself, and accessing quality care. Here is a list of popular walks and biking events for MS in the United States, most of which are organized under the auspices of the NMSS (though each of these events has its own goals and objectives):
Bike MS: The Citrus Tour (Florida), March 5–6, 2022Walk MS Detroit, April 24, 2022Walk MS Anchorage, May 14, 2022Bike MS: Bighorn Country Classic (Wyoming), August 13–14, 2022Challenge Walk Southern California, November 4–6, 2022
In 2022, runners who wish to fundraise for MS are invited to join the Finish MS team and compete in a variety of major marathons and other race events around the world.
Walk MS
Walk MS is truly a national event, with dozens of local walks around the country. Most are held in the spring, in the weeks and months following MS Awareness Month. One of the largest Walk MS events is held in New York City. The 2022 walk is scheduled for April 24. To register for all Walk MS events, visit WalkMS.org.
Challenge Walk MS
Challenge Walk MS, as the name suggests, engages participants in a different way. These are longer walks, typically held over multiple days. One of the largest of these events is Challenge Walk MS Cape Cod, which takes place over three days and covers 50 miles. This year’s Cape Cod Challenge Walk will be held September 9–11, 2022. As with Walk MS, there are multiple Challenge Walk events, held across the country. For more information, visit Challenge Walk MS.
Bike MS
Like Challenge Walk MS, Bike MS is typically held over multiple days, and event courses usually cover longer distances. But there are dozens of Bike MS events across the country, offering different course lengths. Some of the larger Bike MS events include Bike MS: Texas MS 150, which covers over 100 miles and is scheduled for April 30–May 1, 2022. Bike MS: MS 150 Minnesota celebrated its 40th anniversary in 2020, and is next scheduled for June 11–12, 2022. After going virtual in 2021, Bike MS: Los Angeles Coastal Challenge is back in person, on May 14–15, 2022. Information about these and other Bike MS events can be found at Bike MS.
NMSS Public Policy ConferenceConsortium of Multiple Sclerosis Centers (CMSC)European Committee for Treatment and Research in MS (ECTRIMS)Americas Committee for Treatment and Research in MS (ACTRIMS)
NMSS Public Policy Conference
This event, which is open to all MS activists, takes place annually in March, and during nonpandemic years, hundreds of people living with MS from across the country converge in Washington, DC, to discuss policy priorities with elected officials. The conference concludes with more than 300 meetings on Capitol Hill, where activists wearing orange (the color of MS awareness) tell their stories to support policy priorities, such as funding for MS research and affordable healthcare. In 2022, the conference will be held virtually, on March 7. Attendance is free, but registration is required. For more information, visit NMSS.
Consortium of Multiple Sclerosis Centers (CMSC)
The annual meeting of the CMSC, scheduled for June 1–4, 2022, will take place at the Gaylord National Resort and Convention Center in National Harbor, Maryland. The meeting offers educational sessions for physicians and other clinicians who treat people with MS, as well as presentations on new research. For the past three years, the conference has also included a patient education program, called More About MS, and the tradition continues in 2022, on Friday, June 3, from 11 a.m. to 5 p.m. EDT. Registration is required, and the program will be livestreamed for those who cannot or prefer not to attend in person. For more information, visit the CMSC conference page.
ECTRIMS/ACTRIMS Annual Meetings
The European and American Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS and ACTRIMS, respectively) each hold annual forums, featuring cutting-edge research on all aspects of MS, as well as education for healthcare professionals who specialize in caring for those with the condition. The 2022 ACTRIMS forum will be held on February 24–26, in West Palm Beach, Florida, and educational sessions will be livestreamed and recorded for registrants who are unable to attend in person. The theme for the 2022 meeting is Biomarkers. The ECTRIMS forum will take place October 26–28, 2022, in Amsterdam, as well as online, for those who can’t attend in person. The society trains volunteers living with MS or who are family members of those living with MS to serve as peer counselors. These counselors can discuss your MS-related concerns in one-on-one phone sessions or over email. Similarly, the MSAA has several opportunities for those interested in volunteering to work with people with MS or to raise awareness of the condition. The NMSS maintains a popular and active Facebook community for people with MS and their families. Similarly, on Twitter, there are a number of active communities:
MS Society UK, @mssocietyukWorld MS Day, @WorldMSDayMSTrust (in the UK), @MSTrustMS Focus: The Multiple Sclerosis Foundation @MS_FocusMultipleSclerosis.net, @MS_HealthUnionMS Association of America, @MSassociationShift.MS, @shiftms
Get Political About MS
Call your senators, congressional representatives, and local legislators and urge them to take action to ensure those with MS have adequate health insurance coverage, support services, and accommodations. If you want to engage in political action on behalf of people with MS and their caregivers — by lobbying legislators, for example, or other advocacy efforts — the NMSS offers many ways to get involved. People with MS can share their stories — and advice — with others with the condition on the NMSS Blog. MSAA also operates a blog to which people with MS can contribute, called MS Conversations. Both these blogs, and other sites, offer a platform for people with MS to share tips about managing their condition and maintaining quality of life. NMSS offers a database of MS-related clinical trials, sorted by location, for people with the condition to learn more about individual research projects and find out how to enroll. Before enrolling in a clinical trial, though, be sure to talk to your doctor about whether the treatment being studied has the potential to benefit your MS. Some other ways to get involved in MS research include:
Participating in the NARCOMS Registry for Multiple SclerosisJoining the Accelerated Cure ProjectSharing your information with iConquerMS
A good place to start looking is the National MS Society’s Guide to Selecting Financial Assistance Resources. The NMSS website also has a long list of college scholarship resources for students affected by MS, whether they have it themselves or have a family member who does. And the NMSS additionally offers guidance for military veterans with MS, who may be eligible for VA disability benefits. The Multiple Sclerosis Association of America offers financial assistance to cover the costs of MRIs for those who qualify, as well as free cooling products. Applications for both programs can be found online. Both organizations provide educational resources for people with MS and their caregivers and can connect them with online and offline support groups. Visitors to any page of the NMSS website can online chat with an “MS Navigator” to get information on healthcare and support services in their local area. And, through the MSAA, you can talk with advisers either by phone, through the organization’s helpline at 800-532-7667, extension 154, by email, MSquestions@mymsaa.org, or via the online chat feature. Additional reporting by Laura McArdle.
