Your Ultimate Guide to MS Organizationsby Michelle Konstantinovsky Health Writer
Coping with a chronic condition like multiple sclerosis (MS)—or caring for someone who is—can feel scary, strange, and often isolating. Luckily, there are a ton of organizations and groups dedicated to offering support, educational resources, volunteer opportunities, and more to people with MS or those looking to help loved ones. Here’s your guide to nine of the top MS organizations and information to help you decide which one might be a fit for you.
If You're Just Starting Your Journey: National Multiple Sclerosis Society
“I recommend the National Multiple Sclerosis Society (NMSS) to my patients for information and support,” says Christopher Lock, M.D., a multiple sclerosis specialist at Stanford Health Care. In addition to volunteer opportunities like leading self-help groups, the NMSS has an ‘MS Navigator’ program, which is sort of like your personal MS concierge. According to NMSS President Cyndi Zagieboylo, the folks who make up the MS Navigators work one-on-one with people to make sense of otherwise headache-inducing issues like insurance and medication costs.
If You Need Financial Assistance: Multiple Sclerosis Association of America (MSAA)
One major feature that sets the Multiple Sclerosis Association of America (MSAA) apart is on the financial front. MSAA’s MRI Access Fund helps uninsured people and those who can’t afford insurance payments with the cost of brain and c-spine resonance imaging (MRI) scans, which are often necessary in diagnostic and treatment plans. “MSAA also provides free programs and services to improve lives for the MS community,” including a peer-to-peer community, says VP of Communications & Marketing, Andrea L. Griffin.
If You're a Research Junky: The Accelerated Cure Project for Multiple Sclerosis (ACP)
Do you find comfort in numbers and stats? If so, check out the Accelerated Cure Project for Multiple Sclerosis (ACP), which promotes scientific collaboration while arming researchers with data and blood samples obtained from MS patients across the country so they can explore new treatment ideas. The organization has supported 70 studies around the world and generated almost 300 million returned data points for collaborative data mining and disease modeling.
If You're Going Through a Major Life Change: Multiple Sclerosis Foundation
An MS diagnosis can mean having to quickly adapt to lifestyle changes. The Multiple Sclerosis Foundation's free services help patients cope, providing everything from portable wheelchair ramps and vehicle hand controls to cooling aids for heat intolerance. “Our goal is to give individuals with MS the help they need to maintain their health and well-being, to continue to be productive and independent, and to keep a roof over their heads and a safe environment in their home,” says the foundation’s director of communications, Kasey Minnis.
If You Need Some Accountability: Can Do MS
Can Do MS was founded by Olympic medalist Jimmie Heuga after he received his MS diagnosis in 1970. Conventional MS treatments at the time excluded all forms of physical activity, but Heuga, an American alpine skier, wasn’t having it. Rather than commit to a sedentary lifestyle, Heuga developed his own exercise, nutrition, and mental motivation program. Half a century later, the organization offers webinars, programs, and educational seminars that are designed to help patients set realistic, attainable goals around diet, exercise, and mental and spiritual growth.
If You Want a Comprehensive Care Plan: Rocky Mountain MS Center
In partnership with the University of Colorado, Rocky Mountain MS Center boasts one of the country’s most robust research programs. The organization provides seminars, classes, and educational publications that reach throughout the country. “We also provide support services for our community, including the King Adult Day Enrichment Program (KADEP) where as many as 75 clients per day enjoy socialization, learning opportunities, and exercise programs, while their families and caregivers receive some much-needed respite," says CEO Gina Hensrud.
If You Want to Raise Funds for a Cure: Race to Erase MS
Since 1994, Race to Erase MS has raised $50,148,726 to fund ongoing research for a cure. All donations and proceeds go to the organization’s Center Without Walls program, a select network of the top MS research centers in the country. Race to Erase supports collaboration between physicians and scientists and is also deeply dedicated to raising public awareness of MS through educational resources and black-tie events. Their online shop is full of cute tees, tanks, and hoodies that support the cause.
If Your Support Team Needs Support: Consortium of Multiple Sclerosis Centers (CMSC)
Experts on the front lines need support, too. Consortium of Multiple Sclerosis Centers (CMSC) offers healthcare pros tips to create successful models of care, facilitate innovative research, and find new, cool ways to share their knowledge. The organization launched in 1986 and has seen major growth since, with over 250 current member centers in the United States and Canada representing over 12,000 health care professionals worldwide who provide care for more than 250,000 individuals with MS and their families.
If You Need to Connect With Someone Who Really Gets It: MSWorld
Educational resources and research funding are important, but if you’re struggling with a condition like MS, you might just need to vent to someone who really understands. Enter MSWorld: an organization that started in 1996 with six people in a chat room and has expanded to become the largest all-volunteer, patient-run organization in the world, serving over 220,000 members living with MS. The organization offers everything from active message boards to an online creative center where members can share recipes, book reviews, film recommendations, and more.