More than $200,000 was raised for Compassionate Care ALS (CCALS) during gala dinner May 21 at the Fairmont Copley hotel, in Boston. The fundraiser aimed to support patient and family care for those affected with amyotrophic lateral sclerosis (ALS).
Noted celebrity attendance included former WCVB-TV weatherman Dick Albert and Bachelorette & Bachelor Chris and Peyton Lambton. The evening was hosted by WCVB-TV news anchor Natalie Jacobson and featured best-selling novelist Lisa Genova.
Genova, a resident of Chatham, is the author of four New York Times best-selling novels that all center around neurological diseases. “Still Alice”, about a woman with early onset Alzheimer’s disease was turned into a movie of the same name starring Julianne Moore and Alec Baldwin. Genova recently turned to ALS (Lou Gehrig’s disease) as the subject of a fifth novel, to honor Still Alice director, Richard Glatzer who was diagnosed with ALS during the movie’s filming.
Genova talked about her motives for writing an ALS-inspired novel and how she hopes to increase awareness and open dialogue about the disease. During research for the book, she accompanied CCALS Founder and Executive Director, Ron Hoffman, on several home visits to accurately understand the reality of ALS patients and patients’ families.
In a press release, Genova credited the ALS Association’s Ice Bucket Challenge for bringing worldwide consciousness to ALS. Helping people see the disease through the eyes of the sick is her ultimate goal.
“The ALS challenge brought in a lot of money and intellectual awareness, but the compassionate awareness is the next piece. My job is to communicate that as much as possible,” Genova said.
The evening also brought a surprise announcement: anonymous donor pledge for a dollar-for-dollar match of $500,000 for construction of CCALS’ new ALS Education and Retreat Center, which will serve as a respite center for ALS patients and families, and as a venue for educational workshops.
Based in Falmouth, the non-profit CCALS has worked relentlessly for 18 years to support those who struggle with ALS and their families. More than 1,300 families across the U.S. receive support and resources to navigate the complexities and challenges of ALS. CCALS provides guidance and information to people living with the disease and caregivers. Informational and educational workshops include equipment, Medicare or Medicaid assistance, and end of life support.