Advocacy comes in many forms, and recently I wrote about what advocacy by individuals might look like. The other type of advocacy we have going for those of us with multiple sclerosis is the work done on our behalf by a large number of nonprofit organizations. Let me introduce you to just a few of these groups and explain more about their resources and how they are engaged in helping us.
Assistance for daily living
The primary focus of the Multiple Sclerosis Foundation (MSF), located in Florida, is working to improve our daily lives. They have support groups across the country that meet regularly. They also have an active ambassador program and an easy-to-read magazine with current MS news and people-focused stories. The Brighter Tomorrow Grant helps people who need financial assistance to do the small things many of us take for granted, such as accessing a computer or providing funds to install an entrance ramp at home. MSF also has one of my favorite promotions where they honor selected caregivers with a night out at the person’s favorite restaurant, compliments of MSF.
Education for everyone
MS Views and News (MSVN) is another Florida organization that doesn’t get much publicity, but is working every day on its sole purpose – to educate people about MS. Started by a person with MS just a few short years ago, MSVN now hosts patient education programs across the country. MSVN also is a clearinghouse of sorts for the latest MS news from researchers, other organizations, and bloggers. They have a bi-weekly email newsletter update that is well worth the time to read. It is my honor to be a new member of the MSVN board of directors and to have presented and moderated some of their programs. These programs and many others are available on the MS Views and News YouTube Learning Channel.
Miscellaneous medical costs
Multiple Sclerosis Association of America (MSAA) has several programs designed to help with the financial burden of living with MS. The MSAA equipment assistance program will help with the purchase of items for the home, such as shower chairs or grab bars, and also with walkers, canes, and wheelchairs. They also have an MRI access fund, which will help with the cost of the initial diagnostic MRI and the cost of repeat MRIs for people who already have a diagnosis. MSAA is well-known for their cooling program, in which they distribute assorted cooling vests, scarves, and hats to help people who have trouble with heat sensitivity. The MSAA assistance programs are needs-based and you can see quickly, using a household income chart, if you qualify.
Can Do MS is perhaps not a well-known organization, but it has been around since 1984 and was started by Jimmy Heuga, an Olympic medal-winning skier who had MS. His philosophy about living with MS was centered on exercise, nutrition, and attitude. Can Do MS sponsors education programs, but with a twist. They offer weekend seminars for care partners and family members. They also host webinars and in-person presentations and focus on empowering people with MS to live a full life, despite having a chronic disease. I have talked with couples who participated in these seminars and was told they were life-changing for them and their relationships.
Another small, yet mighty, MS organization is the MS Cure Fund, also founded by a person with MS. Their website has a great calendar feature that allows you to find a large number of MS programs in your neighborhood, including support group meetings.
The National Multiple Sclerosis Society (NMSS) is the big name in MS advocacy, and they are visible through their MS Walks, Bike MS, and other fundraising activities. The focus of NMSS is funding research to find a cure. Most everyone knows NMSS, so I won’t expound on them here.
Finally, I can’t overlook the organization that is the official sponsor of iConquerMS, the Accelerated Cure Project for MS (ACP). ACP also was started by a person with MS, and his goal was to change the way research is done and how results from research are shared. ACP hosts a repository of biological samples that are used by researchers looking at MS. These samples came from people like me and two of my sisters as controls. We all donated multiple vials of blood and completed a 50+ page personal history. These samples have been used for studies that are now sharing their results, staying true to the original mission of ACP. You can find a very exciting list of Phase 1 and 2 research study results by clicking on the Cure Map Documents Archive tab.
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