Photo Courtesy of the Huntington’s Disease Youth Organization
Written by Bev Heim-Myers, HSC CEO
The CHDI Scientific Conference always provides the opportunity to connect with our global scientific experts.
Last evening was the opening of the conference and it was wonderful to see Dr. Jeff Carroll, Dr. Ed Wild, Dr. Mark Guttman, Dr. Marcy McDonald, Dr. Jim Gusuella, Dr. Blair Leavitt, Dr. Lynn Raymond and many others (365 attendees in total). Where seasoned scientists are well represented it is also promising to see a number of new scientists to HD. Sustainability of HD research is truly dependent on the minds of young, brilliant up and coming researchers.
The planners of the CHDI conference always try to wow us with the opening keynote. Where this is truly a scientific conference our opening keynote is more times than not an inspirational individual with true experience of Huntington disease.
This year Nora Guthrie, daughter of Woody Guthrie, did not disappoint.
Woody Guthrie died of the effects of HD in the prime of his life. Like so many individuals with HD he was incredibly brilliant and prolific at his vocation before HD ravaged him.
In a short 15 years Woody wrote 3,000 songs and inspired the likes of Bob Dylan and The Beatles. You may remember one of his most famous songs – This Land is Your Land – written in a New York flop house at 43 & 6th Ave.
Woody had a challenging childhood as his mother’s HD progressed. Moving out of his home as a teenager he fell into the world of brilliant song writing and performing.
His goal was to use the tool of a guitar to change the world and make it a better place for all.
Nora shared her father’s story by tapping into his voice and her mother’s voice. At a time when HD was not well understood Marjorie Guthrie was caregiver extraordinaire, Woody was a courageous realist and his own children somehow figured out how to navigate a difficult childhood.
Where Woody was committed to creating songs with a message his focus was positive reinforcement and he stated, “I am out to sing songs that will make you take pride in yourself and in your work.”
The world is a better place having the brilliance of Woody Guthrie influencing generations of artists.