To those who have multiple sclerosis (MS), the founders of World MS Day ask, “What’s your MS motto?” Since 2009, the Multiple Sclerosis International Federation (MSIF) has organized this annual worldwide event in order to raise awareness of this chronic, degenerative, and often disabling disease.
Multiple sclerosis is an autoimmune disorder that affects the central nervous system, which includes the brain, spinal cord, and the optic nerve. The body’s own immune system launches a misguided attack on the protective myelin sheaths covering the nerve cells. This damage causes a wide array of symptoms. Depending on which part of the central nervous system is impacted by disease activity, patients can experience everything from loss of vision, slurred speech, and cognitive changes to weakness, fatigue, muscle spasms, and numbness.
In the United States, more than 400,000 people have been diagnosed with MS. Worldwide, that number is more than 2.1 million.
World MS Day has three main objectives: to raise awareness and understanding of MS amongst the general public, to use social media channels to spread the word about MS, and to broaden the global movement of MS organizations and their partners.
With the funds they raise through efforts like World MS Day, the MSIF supports international research into the understanding, treatment, and cure of MS through focused MS research projects and by supporting individual scientists.
“World MS Day was established by the Multiple Sclerosis International Federation and its member MS societies for any individual, group, or organization to work together to raise awareness of MS,” said Ayesha Ali, Campaigns Manager for MSIF, in an interview with Healthline. “We establish the annual themes, come up with the creative concepts, and provide the tools and resources for the campaign."
Last year, the “1000 Faces of MS” theme program asked patients to upload their images and stories and to join others to literally put a face on the disease. The photo compilation is still live online and is a place where those who suffer from MS may find inspiration, connection, and camaraderie. Ali hopes that this year's “What’s your MS motto?” campaign will be just as successful.
"We always put people with MS at the heart of the campaign, but ultimately in order to raise awareness it needs to appeal to a wider audience," Ali said. "We are competing with so many awareness-raising campaigns that the design has to be strong enough to stand out amongst all of them.”
The Impact of World MS Day
By supporting the development of effective national MS societies, the MSIF's fundraising efforts help those suffering from MS attain better quality of life through access to resources and healthcare in their home countries.
With the money they raise, the MSIF provides
high-quality, free information about MS for anyone affected by the
disease around the world through e-news and print publications.
The organization has also collected survey data about the public's baseline knowledge of MS in five countries around the world. They plan to repeat the survey in 2014 to help measure the impact of MSIF awareness programs like World MS Day on communities abroad.
The MSIF blog highlights activities around the world that are taking place this year for World MS Day, including a celebration in Szekesfehervar, Hungary on May 18. Members and supporters of the Hungarian MS Society met with the city mayor and marched through the streets with red and white balloons to raise awareness of the disease.
On May 26, MSIF and the China MS/NMO group coordinated an event in central Beijing to celebrate World MS Day. Raising awareness of MS and providing access to neurologists is a challenge in China, but MSIF organizers say they are beginning to affect real change.
Finally, Multiple Sclerosis Spain (EME) and Genzyme, makers of the MS drug Aubagio, are marking this World MS Day with the launch of the mobile game “EME Fighter” (MS Fighter) in a clever effort to raise awareness around the world through peer interaction.
How You Can Get Involved
Tomorrow, May 29, is World MS Day and you can get involved by sharing your motto at worldmsday.org. “[You] can also join any of our social media channels to be kept up-to-date on the campaign this year, but also future campaigns,” Ali added.
Healthline will be hosting a tweet chat with Ali, Samantha Schech of the Multiple Sclerosis Association of America, Ceri Angood of MSIF, and Jeri Burtchell, an MS blogger and freelance writer for Healthline. Join in the tweet chat tomorrow at 11 a.m. Eastern and be sure to use the hashtag #LivingwithMS.