Multiple Sclerosis (MS) Awareness Month: March 2021

Multiple sclerosis, or MS, is a disease of the central nervous system that can cause symptoms throughout the body. It's believed to be an autoimmune condition, in which the immune system mistakenly attacks normal tissues — inMS, the immune system 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.

但目前还不清楚是什么原因导致我的开始mmune reaction, and most people diagnosed with MS have no known risk factors.

Most major health organizations have long estimated the prevalence of MS in the United States to be about 400,000 people, butresearch published in March 2019 in the journalNeurologyputs the number of Americans living with MS at 1 million.

To help people with the disease, as well as those who have a loved one with MS, 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 todiagnoseandtreatthe 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 (核磁共振成像) scan of a brain of a person with MS.

RELATED:Your Everyday Guide to Living Well With Multiple Sclerosis

我n addition to MS Awareness Month each year, there’s World MS Day and MS Awareness Week.

Also of note is the annual我nvisible Disabilities Awareness Week, hosted by the the我nvisible Disabilities Association (IDA), which is held in October.

MS Awareness Week Is March 7–13

As part of MS Awareness Month, MS Awareness Week is held annually in the United States. In 2021, it’s scheduled for March 7–13.

During MS Awareness Week, theNational 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 Dayis typically observed on May 30 each year. Established by theMultiple 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. For 2019, MSIF centered World MS Day on the theme of “My Invisible MS,” and how the invisiblesymptoms of MShave a significant impact on quality of life. The aim of the campaign was to challenge common misconceptions about MS and help people understand how to help those with conditions that are not always visible, including by lobbying decision-makers to provide the right support.

Mirroring MS Awareness Week, the World MS Day theme for 2020 through 2022 is “Connections,” and events focus on building community connections, connecting with oneself, and accessing quality care.

A number of walks and other events have been designed to raise funds for research and support for those with the condition.

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):

• Walk MS San Diego, April 10, 2021
• Walk MS New York City, May 2, 2021
• Bike MS: Texas MS 150, May 1, 2021
• Challenge Walk MS Cape Cod, September 10–12, 2021

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 2021 walk is scheduled for May 2. Walk MS New York City includes a one-mile and a three-mile course. For information on all Walk MS events, visitWalkMS.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 10–12, 2021.

As with Walk MS, there are multiple Challenge Walk events, held across the country. For more information, visitChallenge 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 includeBike MS: Texas MS 150, which covers over 100 miles and is scheduled for May 1, 2021.Bike MS Minnesotacelebrated its 40th anniversary in 2020, and is next scheduled for June 12, 2021.

Another popular biking event,Bike MS: Los Angeles Coastal Challenge, has gone virtual in response to theCOVID-19 pandemic. Using the hashtag #VirtualBikeMS, you can fundraise and participate at your own pace, whether by biking around your own neighborhood or by logging the miles you put in on your bike trainer.

Finally,Bike MS Coloradowill be held June 26, 2021.

我nformation about these and other Bike MS events can be found atBike MS.

There are several conferences and meetings held by various societies offeringpeople with MSand their caregivers a chance to network with others facing similar challenges. These include:

• NMSS Public Policy Conference
• Consortium 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

During this event, which takes place annually in March, hundreds of MS activists from across the country converge in Washington, DC, to discuss policy priorities for people living with MS. The conference concludes with more than 300 meetings on Capitol Hill, where activists wearing orange (the color of MS awareness) will tell their stories to support policy priorities like funding forMS researchand affordable healthcare.

我n 2021, this conference has had to move online, and in-person events will be replaced by virtual meetings. For more information, visitNMSS.

Consortium of Multiple Sclerosis Centers (CMSC)

The annual meeting of the CMSC, scheduled for October 25–28, 2021, in Orlando, Florida, offers education on the latest options for physicians and other clinicians who treatpeople with MS, as well as presentations on new research. For more information, visit theCMSC conferencepage.

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 new research onMS treatmentas well as education for healthcare professionals who specialize in caring for those with the condition. The 2021 forums will be held virtually — ACTRIMS between February 25 and 27, 2021, and ECTRIMS between October 13 and 15, 2021. (The ECTRIMS forum is tentatively also scheduled to take place in-person in Vienna.) You can find more information on ACTRIMS (whose 2021 theme isThrough the Spectrum of Multiple Sclerosis)here, and more information on ECTRIMShere.

我f you want to get even more involved in the MS community, the NMSS can connect you withvolunteer opportunitiesin your local area, or with individual groups who share similarchallenges or interests.

The society trains volunteers living with MS or who are family members of those living with MS to serve aspeer 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 involunteeringto work with people with MS or to raise awareness of the condition.

我f you can’t attend a conference or participate in any of the events listed above, social media can help you boost the message of MS awareness and connect with others.

The NMSS maintains a popular and activeFacebook communityfor people with MS and their families, but there are other groups as well, includingMS Connect.

Similarly, on Twitter, there are a number of active communities:

• @myMStoday
• MS SocietyUK,@mssocietyuk
• World MS Day,@WorldMSDay
• MSTrust(在英国),@MSTrust
• MS Focus: The Multiple Sclerosis Foundation@MS_Focus
• MultipleSclerosis.net,@MS_HealthUnion
• MS Association of America,@MSassociation
• Shift.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.

我f 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 toget involved.

Personal stories can help us better understand the condition and the challenges those with it face every day. Everyday Health has profiled several people with MS who are living well with the condition, including the MS advocateVictoria Reese. After she was diagnosed with MS in 2012, Reese launched the #WeAreIllmatic campaign, in order to help Black Americans living with MS through advocacy work and community support.

People with MS can share their stories — and advice — with others with the condition on theNMSS Blog.

MSAA also operates a blog to which people with MS can contribute, calledMS 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.

我n order to develop new and better therapies and other interventions for MS, clinical trials need people with the condition to enroll and assist in research efforts.

NMSSoffers 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.

Examples of ongoing clinical trials include:

• MBCT and CBT for Chronic Pain in Multiple SclerosisThis study is designed to assess whether cognitive behavioral therapy or mindfulness-based cognitive therapy can reduce pain intensity (and secondary outcomes, including depression and fatigue) in those living with any form of MS. This 12-week treatment will be carried out via videoconferencing sessions.
• A Low-Fat Diet for Fatigue in MSThis study aims to determine whether a low-fat diet can help reduce fatigue in people living with MS.
• 我nternational MS Microbiome StudyThis study will assess the role of gut bacteria in the progression of MS.

A number of financial resources are available for people with MS. NMSS offers an annual scholarship for students affected by the condition. The scholarship is for high school graduates with MS, or the dependent children of parents with MS who will be freshmen attending an accredited college or university in the United States and will be enrolled for a minimum of six credit hours in a degree-granting program. More than 600 scholarships are awarded every year. Interested students may apply through theNMSSwebsite.

Similarly, the MSAA sponsors eight annual scholarships for students with MS. It’s open to all high school seniors, and college undergraduates with MS who are enrolled at an accredited college or university. Call 800-LEARN-MS for more information.

我n addition, theElaine Chapin Fundsponsors eight annual scholarships for students impacted by MS, either directly or as a family member. Applicants must be full-time students enrolled at an accredited two-year or four-year college, or at an approved technical or vocational school.

The MSAA also offersfinancial management and legal advice services, including information on health insurance and treatment costs. It also offers financial assistance to cover thecosts of MRIsfor those who need it. Meanwhile, the NMSS offers guidance formilitary veteranswith MS as well as parents of children newly diagnosed with the condition.

Both organizations provide educational resources for people with MS and their caregivers as well as connect them with online and offline support groups. Visitors to the NMSS website can 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, or via theonline chatfeature.

Additional reporting byLaura McArdle.