The Huntington's Disease Alliance is delighted to welcome Charles Sabine OBE as the next speaker in our 'Family Voices' series. Charles, a former Emmy-winning news journalist for NBC, is a tireless global campaigner for the Huntington's Community. Coming from a Huntington's family himself, Charles discovered in 2006 that he also carried the expanded gene.
"My neurologist said, there is nothing you can do about this disease, just live your life as well as you can."
However, in the following months, Charles realised the neurologist was completely wrong.
"There is everything I can do about this disease. The problem is finding the time to do it all.”
Since then, Charles has travelled the world advocating for Huntington's families. In 2017 co-organised an event where the Pope met a number of Huntington's families, documented by the film 'Dancing at the Vatican'.
Please join us as Charles reflects on 'Where have we come in the 15 years since I left NBC to become an advocate for the Huntington's disease community in 2007?' The answer, he will tell us, is a very long way indeed - especially in scientific understanding of the disease and the use of communications to create a well-informed global community collaborating in research. There is however, still
one area we need to improve. 'Most families knowing that they have the disease in their blood feel the need to hide that reality. Imagine what we could do if we engaged all of them, too?
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