It is perplexing how to get today's news organizations to pick up and share stories with their readers.....As a small, non-profit we have helped to fund research that is making major breakthroughs yet, the Seattle public has no idea that this work is being done in their own backyard. Last year researchers here (at the Hutch & UW) in collaboration with scientists in the Netherlands & Rochester, NY made a huge breakthrough in Facioscapulohumeral (FSH) Muscular Dystrophy research - it made news in New York, being a featured story in the New York Times yet, Seattle readers were left in the dark.
It is amazing the progress we have made - functioning from our home on a "all volunteer" basis without getting the support from our local press. Yet, our organization Friends of FSH Research (www.fshfriends.org) has been able to raise over a million dollars for FSH research and has helped launch pilot projects which generated new data, their findings which earned the respect and funding from the National Institutes of Health.
Facioscapulohumeral (FSH) Muscular Dystrophy, today believed to be the most common form of Muscular Dystrophy, (who knew that there are more than one form?) has received little research support in the past from the existing funding sources. This condition impacts the lives of those affected throughout their life span - causing a weakening then ultimately the death of the muscles of the upper back, upper arms and face. Eventually the muscle destruction extends into the muscles of the lower legs and trunk .... it is an unforgiving condition. Not a sexy condition, not one which attracts media attention... one often overlooked, forgotten.
Friends of FSH Research proves the "Power of One" - one family, one love for their child. We would not have been able to succeed without the internet, social media and the community. This is one story that has not yet been helped by traditional media - though I am still hopeful that one day they will pick up our story for I think it is one worthy of telling.