MDA Champion: Vance Taylor

What it means to be an advocate

For Vance Taylor, the key to being an effective advocate is not only having a “voice,” but using one’s voice to articulate thoughts, concerns, priorities and ideas to federal decision-makers. “Taking action” and speaking with members of Congress about issues of importance to the MDA community ensures success, as progress in MDA’s legislative efforts translates into success for people affected by muscle diseases and their families. If elected officials aren’t aware of what matters to the MDA community, they can’t represent effectively.

Newest MDA National Task Force member Vance Taylor is comfortable in the Capitol.

It’s up to you — use your voice and raise awareness now.

“Have confidence in your message and know that your concerns are legitimate,” said Taylor, a member of MDA’s National Task Force on Public Awareness. “You might be one person with quality ideas, but once you realize that your ideas are going to benefit a lot of people, you recognize that each of us has a responsibility to be an advocate on behalf of ourselves and those that cannot advocate for themselves.

Becoming an advocate is easier “when you are dealing with issues that you can relate to or affect you personally,” Taylor adds. ”When you take action, you also are helping others. If you think about your own life, asking what are ways I can improve my situation? … There are a lot of people who are in the same position that will benefit. The type of change that could help me can help a lot of other people as well.”

While some may feel that a single voice could get lost in the shuffle, Taylor explains: “Having a neuromuscular disease is more than just about me — many are not as fortunate as I, and can’t enter the work force or get an education. Those who are afforded these opportunities and resources have a responsibility. I have an opportunity to speak up when no one else will. It is not enough to attain a personal level of accomplishment; you have to help others.”

Fortunately, there are plenty of ways individuals can take action and several tools available to aid in their efforts.

“In this day and age, there are no good excuses that folks can come up with for not making their voices heard. Social networking, the Internet, phone calls … People are so accessible, and there is no excuse for not getting involved,” he emphasized.

Taylor also notes that the partnership with MDA is about support, family, community and success. MDA “helps us believe we are not alone.”

”My role as a member of the Advocacy team is to go on the Hill, meet with different members of the House of Representatives or Senators and their staff, and discuss with them the good work that MDA is doing,” Taylor explained. “You start explaining to members of Congress that there are thousands of people within their districts — their constituents — that rely on these services. When you look at it from that perspective, it is not one person trying to achieve, it is a whole family, a national team, pushing you to be successful in life.”

Taylor believes it’s important for individuals nationwide to take action, tell their story, and talk about their partnership with MDA. Taylor encourages everyone to share MDA’s message, as well as discuss the work MDA is doing on Capitol Hill.

“Because our federal partners, our senators and representatives, play a key role in issues like research and support services, it’s important for them to know what it is they are fighting for, or should be fighting for, on behalf of their constituents,” he said.

Taylor is an inspiration to his friends, family and colleagues, and he’s a role model for all adults and children affected by muscle disease.

“While I have muscular dystrophy, it does not define me. My physical disability is not going to stop me from going out and achieving my dreams.”

L. Vance Taylor, 32, is a principal with the Washington, D.C., government affairs and business development firm Catalyst Partners LLC.

Taylor is one of the few people in the country with a master’s degree in homeland security, and has used his expertise in that area to advance the mission of homeland security on Capitol Hill and in the private sector.

He also served as an aide for two members of Congress: Rep. Mike Thompson, D-Calif., and Rep. Zoe Lofgren, D-Calif. In Washington, he provided legislators with advice and recommendations on issues such as homeland security, immigration and infrastructure grants.

An accomplished public speaker and longtime volunteer for MDA and the Boy Scouts of America, Taylor has served as a co-host of the DC area’s regional broadcast of the MDA Labor Day Telethon. In 2009, he and his family appeared on the national Telethon broadcast live from Las Vegas. In honor of his outstanding leadership and achievement, Taylor received the Robert Ross MDA Personal Achievement Award for the District of Columbia in 2007. He became a member of MDA’s National Task Force on Public Awareness in 2009.

He’s affected by limb-girdle muscular dystrophy, a progressive disease that causes muscle weakness and atrophy, starting in the muscles of the shoulder and pelvic area. He uses a power wheelchair for mobility.

Taylor lives in Oxon Hill, Md., with his wife, Casey, and their two daughters.