In 1945, Sylvia Lawry, suffering from multiple sclerosis (MS), took out an ad in The New York Times that read, “Multiple Sclerosis: Will anyone recovered from it please communicate with patient.” The following March, the MS movement was born when Lawry founded what became the National MS Society (the Society).
Because of that, “March has become the cross-organizational month to bring awareness to MS-related issues,” said Cynthia Zagieboylo, the Society’s president and CEO, in an interview with Healthline. This week marks MS Awareness Week, March 3 through 9, which kicks off the month-long campaign.
The Society is joined by the Multiple Sclerosis Association of America (MSAA) and the Multiple Sclerosis International Federation (MSIF), along with a host of other organizations, in a worldwide effort to spotlight MS. The devastating autoimmune disease affects the central nervous system and is the leading cause of disability in young adults.
One Goal: End MS
Although every organization is raising awareness in their own way, they all share a common goal: to put an end to MS.
“Every connection counts in moving forward...to create a world free of MS,” Zagieboylo said. This year the Society has launched a site to help connect those affected by the disease. Visitors to MSconnection.org can upload their picture and tell their story. “Already some 1,000 individuals—celebrities and public alike—have visited the site and shared why they connect to the MS movement,” she added.
The MSIF launched their countdown to May 28, World MS Day 2014, today. This year, the focus is on access, said Peer Baneke, CEO, in an interview with Healthline. “We want to raise awareness of MS and the access issues faced by people with MS around the world. Our vision is a world without MS,” said Baneke, whose own father had the disease. The mission of the MSIF is to lead the global MS movement and to improve the quality of life for those living with the disease.
The MSAA is raising awareness—and getting people to exercise—with their "Swim for MS" initiative. Volunteers create their own swim challenge while recruiting online donations to support MSAA’s free programs and services. Swim for MS is unique because people are able to plan their own swim activity, either individually or as a team. There have even been cannonball-jumping contests.
Progress in Research
“We think there has never been a more exciting time in MS research,” said Zagieboylo, “and we believe that we are at the beginning of the end of MS.” But ending MS means more research, especially on progressive forms of the disease.
In order to tackle progressive MS, the MSIF has collaborated with other organizations around the world to form the Progressive MS Alliance. “Solving so complex a problem will require resources, expertise, and talent from across the globe,” said Baneke. They are bringing together the world’s leading academics, clinicians, industry representatives, and MS organizations.
With Progress Comes Hope
The first therapy for MS didn't appear until 1993, but less than two decades later there are 10 approved treatments, with more on the way. “There are many effective treatments that have both prevented worsening of disease and lessened the number of attacks,” Cindy Richman, MSAA's Senior Director of Patient & Healthcare Relations, told Healthline. “Identifying why the immune system malfunctions as a response to a specific gene may play a key role."
Once they understand the genetic response, scientists may be able to slow down the disease or stop it completely. Researchers are also working on medications to regenerate the nerves damaged by MS, so disabilities might one day be reversed. "There is much to look forward to in the future to repair both function and ability,” Richman added.
In an effort to raise awareness of the need for people to take part in academic studies, Antidote will be hosting a Google+ Hangout On Air Broadcast on Thursday, March 6th at 3 p.m. ET to talk about MS research. The guest speaker will be Dr. Valentina Fossati from the New York Stem Cell Foundation who will be sharing the advances her group has made in this promising area of research.
Every effort to raise awareness, no matter how big or small, matters. Whether you wear orange, volunteer for a clinical trial, or take part in fundraising activities this month, you are helping to bring the world one step closer to ending MS for good.