I have always had a fascination for medicine, and thanks to the Internet, I’ve become a tireless researcher. Having already faced breast cancer a decade ago, the only power I have ever felt over the adversity of a life-threatening illness is knowledge. When I was diagnosed in August 2014 with bulbar ALS, I had to know the specifics of the disease. But more importantly, I had to know who was at the forefront fighting it.
Having spent my entire professional career providing public relations counsel to hundreds of actors and entertainers, I was no stranger to the value of their influence in bringing attention to far-ranging issues, and ALS would be no exception. I had seen what my longtime client Michael J. Fox was able to do for Parkinson’s research and I was determined to follow his example. With the support of clients past and present, Renee Zellweger, Reese Witherspoon, Emmy Rossum and many others, I immediately decided I would commit my energies to support awareness efforts that would translate into additional funding for research.
I met Clive Svendsen through the Cedar Sinai ALS program. I had read about his research in gene therapy and later toured his lab with my friend and ALS advocate, Courteney Cox. We were both very excited by the promise of his research. While there are no cures, I was admittedly daunted when I discovered I was not a candidate for any of the gene therapy clinical trials since my ALS (bulbar) began in the brain, and not in the spine as in 99% of cases.
We cannot always derive the benefits of our efforts for ourselves, but we can help others. That is my life’s path.
2 thoughts on “Thrust into ALS Advocacy”
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I just came across this article and was recently diagnosed with ALS. Similar to Nanci, I was diagnosed with ALS (Bulbar) and I was surprised to read that gene therapy clinical trials excludes those of us afflicted with this form of ALS. While I know there is a great deal of research being done to find an effective treatment or potential cure for ALS, more needs to be done. Millions of dollars are being poured into research, but a cure is no closer than when famed baseball player Lou Gehrig was diagnosed. It appears the FDA is part of the blame here as they seem to take their time in approving drugs or therapies that could be beneficial to those of us afflicted with life threatening diseases. Shame on them. Japan recently approved for use a a drug that has shown promise in slowing down ALS. The FDA will listen to arguments about its proposed use in the U.S. in June of this year. Given the progressive nature of ALS, one would think the FDA would immediately approve therapies and treatment that can have positive affect on this disease.