Thursday, March 8, 2012

Interviews with Inspiring MS Advocates at NMSS Conference

Before the National MS Society Public Policy Conference was complete, I had an opportunity to interview more inspiring MS activists.  You can read their stories:

From the Sea to Capitol Hill: An Interview with MS Activist Donnie Horner
In his first two years stationed in San Diego, Donnie spent about 300 days at sea. His job required him to spend many hours on his feet. “When I was out to sea, I began to develop tingling in my legs in July and August 2009. Because I had spent so much time out to sea, I said to myself, ‘Man, this just must be sea legs or something like that.’ When we got back into port, I noticed my symptoms started to get worse. I went to a couple of my buddies and they said, ‘You really need to go see a doctor.’ So I did.”

Donnie described his legs as feeling weak and heavy, with the sensation of falling asleep. He would try to hit his legs in an attempt to wake them up. “My mind was going, but my legs weren’t able. And it hurt, the constant pressure of standing on the needles.” Coincidentally, Donnie had never experienced these symptoms until after he received required vaccinations – anthrax, tuberculosis, tetanus – in May/June 2009. “I’m not kidding. I received a dozen vaccinations the summer I was diagnosed.”
Increase Funding for MS Research: An Interview with Sarah Keitt
“I have been involved with the MS society since 2000 when I was first diagnosed. I’ve volunteered in one way or another. I have a background in public health and worked on clinical research issues [in my career], so I have a strong familiarity with study design, clinical research, and bioethics. Then an opportunity came up that fit my professional interests along with my personal interest in MS.”

“If you don’t get involved with advocacy, no one else is going to do it for you. It’s up to us, as people with MS, to make sure that the funding for research is there, that services for people with MS and other disabilities are there. It’s really critical that we get involved in any way that we can!”
Thanks to Donnie and Sarah for sharing their stories and becoming advocates for people living with MS nationwide.  I met so many wonderful individuals during the Conference that I wish it were possible to share all of their stories.  We have so many in the MS community who are tireless leaders and wonderful advocates.

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