Lisa Genova, Allie LaForce. Anna Canoni & Marc Scibilia Team Up to Support HD Awareness Month
New York, NY (May 2015) – After folk music legend Woody Guthrie died from complications with Huntington’s disease (HD) in 1967 at the age of 55, his wife Marjorie founded the Huntington’s Disease Society of America (HDSA) the following year. On May 27th, HDSA paid tribute to the Guthrie family legacy by going back to its roots with inspiring family stories and great music at the 2015 Life in HD event at the Baruch Performing Arts Center in New York City.
New York Times bestselling author Lisa Genova of Inside the O’Briens and Emmy Award winning anchor Allie LaForce shared the stage in an inspiring and educational conversation about HD and the impact it has on a family, before Woody Guthrie’s granddaughter Anna Canoni discussed the Guthrie family’s HD story and went on to introduce singer/songwriter Marc Scibilia.
Lisa’s new book Inside the O’Briens portrays a Boston police officer battling the devastating symptoms of HD. Inside the O’Briens follows Lisa’s last book, Still Alice,which was made into a major motion picture where actress Julianne Moore won several awards including an Oscar for her portrayal of a woman with Alzheimer’s disease.
L – R: HDSA CEO Louise Vetter, Allie LaForce, Lisa Genova, Marc Scibilia, HDSA Trustee Jennifer Leyton and Anna Canoni at the 2015 Life in HD event in New York City. Photo by Nicole Mago.
Allie LaForce was Miss Teen USA in 2005 and is currently one of the nation’s top sports reporters. She is married to Los Angeles Angels’ pitcher Joe Smith who is at-risk of inheriting HD.
A highlight of Marc Scibilia’s acoustic set was his rendition of the Woody Guthrie classic “This Land is Your Land” which gained Marc notoriety in the Jeep commercial during the 2015 Super Bowl. Marc also made a special dedication to the HDSA National Youth Alliance prior to his song “Bright Day Coming.” Marc’s debut album will be released later this year.
“Life in HD was an incredible night and the perfect ending to Huntington’s Disease Awareness Month,” said Louise Vetter, HDSA’s Chief Executive Officer. “Honoring the Guthrie heritage with family stories and music filled with hope and love is vital to HDSA’s culture and our ability to assist those affected by Huntington’s disease.”
Photos by Nicole Mago
The mission of HDSA is to improve the lives of everyone affected by Huntington’s disease and their families. Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
Life in HD guests also had an opportunity to win a copy of Woody Guthrie’s Wardy Forty which explores the five years Woody spent at Greystone Park State Hospital in Morristown, NJ. He was a patient there from 1956-61, in Ward 40 and called it “Wardy Forty.” Along with contemporary photographs from acclaimed photographer Philip Buehler Woody’s years at the facility are brought to life.
