I’m An MS Activist

You might call my wife, Kristi, and I a “Hollywood” power couple. I spent six years in the 80s (of my 20+ years in the industry) working on one of the most popular sitcoms of all time, “The Cosby Show.” Kristi is a professional voice-over artist, best known as “the voice of time” on the Food Network’s “Iron Chef America.” But… we no longer live in Los Angeles. In 2007, seeking a place that was quieter, slower and more family-friendly, we packed up our four kids in the car and moved to Spokane. Since I had been diagnosed with multiple sclerosis in 1997 and the LA heat had the potential to exacerbate my symptoms, we were also seeking cooler weather – we found it!
 

Immediately after my diagnosis, I took up video editing (a “sitting” profession) out of fear that I’d be dependent on a wheelchair within the coming year. I still do some editing and contribute to three video companies, but more and more I’m focused on raising my kids, fishing and speaking about what it’s like having MS at various local National MS Society events. I am not dependent on a wheelchair – I’m proud to say that my MS has been successfully controlled by treatment.
U.S. Representative Cathy McMorris Rodgers
and MS Activist Mike Burns

In the years we’ve lived in Washington, I’ve also found my way as an MS activist. Initially the Society invited me to the capital for a State Action Day; I really enjoyed meeting my representatives and I take pride in being a voice for people with MS. Though I’ve been fortunate that the disease hasn’t taken my ability to earn an income, others have not – this story needs to be told. So last month, I met with U.S. Representative Cathy McMorris Rodgers of Washington’s Fifth District while she was in town on recess. A local Society staff member and I presented her with an award as the Society’s Representative of the Year, its highest honor for public officials. Representative McMorris Rodgers is recognized as a leader on disability issues by members of both sides of the political aisle.

I started the meeting by talking about my experience with MS. Then we provided details on several important issues including the Lifespan Respite Care program (she supported the Lifespan Respite Care Reauthorization Act), funding for the Food & Drug Administration (which reviews each of the new MS treatments), and finally funding for medical research and some of the exciting current MS research – which seemed really important to Representative Rodgers – as it is to me. The Society staff member also encouraged Representative Rodgers to attend the Spokane Walk MS event.

It was wonderful to finally meet Representative Rodgers in person, as I’ve been in touch with her for several years through personalization of Action Alerts and other emails. That’s what activism is all about – building relationships so that we can call on our public officials when we need them. You can be an MS activist too, even without visiting your representative in person – it’s easy to sign up for the Society’s advocacy updates and action alerts and to get engaged via social media. What will you do to make your voice heard?
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    2 Comments

  • Brandina Bohart   Aug 13, 2016 11:16 AM
    Hello,I have been diagnosed with Secondary Progressive MS since 2014. I am only 37,I have two children. My children were taken while I was undiagnosed, it's been three y ears & I still do not have them. I have corroborated with family court &;CPS ,but they keep using my MS against me ! I have reached out to The Looking Glass (parents w disabilities ) CPS is discriminating against me & harrassing me. I have had two unfounded cases & I took a plea. Can u possibly help in any way? I could use anything at this point. I cannot afford a lawyer all i have is a public defender who works close w CPS. My children miss there mother,my little boy is only 6. He thought I was dead. My daughter is 16 and an outstanding young woman,& CPS will not comply. This entire situation is absolutely wrong & discusting. I hav filled out form for atorny General & dept of justice. I am so scared that my MS will get worse from the stress & then I won't be able to be a mother. If you can help at all my # 607-378-7903 Brandina Bohart 18 Jennings St apt 102 Corning, NY I hav a hard time answering my phone ,but I always check my messages
  • Brandina Bohart   Aug 13, 2016 11:16 AM
    Hello,I have been diagnosed with Secondary Progressive MS since 2014. I am only 37,I have two children. My children were taken while I was undiagnosed, it's been three y ears & I still do not have them. I have corroborated with family court &;CPS ,but they keep using my MS against me ! I have reached out to The Looking Glass (parents w disabilities ) CPS is discriminating against me & harrassing me. I have had two unfounded cases & I took a plea. Can u possibly help in any way? I could use anything at this point. I cannot afford a lawyer all i have is a public defender who works close w CPS. My children miss there mother,my little boy is only 6. He thought I was dead. My daughter is 16 and an outstanding young woman,& CPS will not comply. This entire situation is absolutely wrong & discusting. I hav filled out form for atorny General & dept of justice. I am so scared that my MS will get worse from the stress & then I won't be able to be a mother. If you can help at all my # 607-378-7903 Brandina Bohart 18 Jennings St apt 102 Corning, NY I hav a hard time answering my phone ,but I always check my messages