Meet Other Activists - National Multiple Sclerosis Society

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Meet Other Activists

Meet MS activists from all over the country. Learn how they got involved, what they’re passionate about and how they drive change.

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MS activists are the voice of people living with MS nationwide. Many are individuals who live with MS; some are friends, colleagues and family members. All MS activists recognize their passion and power to move us closer to a world free of MS. Get to know how some MS activists got involved and what they’re passionate about—below. And be sure you’re a part of the MS Activist Network too! 

Hear from Local MS Activists Who Have Shared Thier Story:

Stacy Sinclair - Williamsburg, VA
I was 15 years old when my mother, Christine, was diagnosed with MS. After I finished college, I moved close to home so that I can help my father, Marc, care for Mom and my brother Matthew who has Down syndrome. In early 2013, my mom lost the ability to walk which vastly increased the amount of support she needs to get through the day. Now, my father, brother and I assist my mom with getting out of bed and bathing. We also help her in the restroom, feed her and assist with everyday activities such as writing. Our family’s lives center around Mom and her care because it is important to us that she is able to stay at home with the people she loves. Mom was able to qualify for Medicare early on, but since Medicare does not cover long-term services and supports, our family experienced financial strain paying out-of-pocket for a nurse to come twice a week. Looking for help, we applied for the Virginia Lifespan Respite Voucher Program and we were approved for a voucher that supported 16-18 hours of respite. The voucher gave our family time to rest; run errands, and do something enjoyable together. I urge the Virginia legislature to provide funding for programs like the Lifespan Respite Voucher Program so that other families do not give up hope, but receive the help that they need.
H. Steven Shepard - Bristol, VA
I was diagnosed with MS ten years ago and waited for two years to receive both my Social Security Disability decision and Medicare. During this ‘waiting period,’ with no income and no insurance - my symptoms progressed to where I went from 'wall surfing' to using a cane and I now require use of a power chair. I was living with a friend in a two story townhouse that was highly inaccessible. I was a proudly independent person who took personal hygiene and taking care of my environment very seriously, and now I am unable to safely perform many activities of daily living. I moved to an independent living apartment complex with staff support for assistive services. They adapted an apartment to meet my distinctive MS related needs. I consider myself lucky, and understand that many Virginians with disabilities may not have the same opportunities. I had to move away from a rural area and leave a 12-year relationship in order to relocate to an area that offered these kinds of services. Although I appreciate my new facility, if I was able to adapt my own home to make it more accessible or had more affordable and accessible housing options near my community - I may have been able to stay closer to home.
Marques Jones - Henrico, VA
I was diagnosed with MS in the fall of 2008. The diagnosis was an anticlimactic end to a long journey that included 5 neurologists from 2 states, representing 4 health care providers. The third neurologist that I saw ran thousands of dollars’ worth of tests and came back with the profound statement that he was “90%” sure I had MS. While I felt like I was getting closer I couldn’t help feeling a little unsettled by the news that he was referring me to yet another neurologist. The good news for me was that the fourth doctor was able to confirm my diagnosis. The bad news: she wanted me to be examined by one of her colleagues to ensure those pesky headaches weren’t migraines after all. That long winding road led me to the realization that everyone should have the chance to take charge of their own health and wellbeing. Without the outstanding health benefits I was provided by my employer, I would have never been able to pursue diagnosis and treatment of the mystery illness that was plaguing me. I advocate for Medicaid Expansion because there are 400,000 Virginians whom are less fortunate than I and currently lack access to affordable, quality health care but could qualify for Medicaid if Virginia expanded the program. Without access to health care - diagnosis and treatment become impossible, sentencing those affected to a lifetime of diminished productivity and reducing overall quality of life. Those of us diagnosed with MS don’t want handouts; we want the opportunity to continue to live life as fully as we can. Access to health care, during good times and bad, is critical to realizing that goal.
Retta Yorns - Alexandria, VA
My husband and I needed to renovate our master bath because it was not accessible and safe for me to use. My MS was causing weakness in my legs, particularly on my right side and it was also causing foot drop. We needed to make the bathroom easier for me to navigate. The Livable Home Tax Credit (LHTC) helped pay for the improvements we wanted to our bathroom. I now have a walk in shower which means I don't have to step over the side of a tub. We also have a shower seat which allows me to sit on days when my energy is lagging. I hope that the Virginia legislature increases the total amount of tax credits granted for the LHTC program so that other Virginians have the help they need in order to make their homes more accessible and more livable.

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