PLATTSBURGH — Roger and Darlene Long used an easily portable form of communication at the ALS Walk of Hope and Spring Festival.
Mrs. Long held up an alphabet card and ran her fingers along its surface. Then, her husband, who has amyotrophic lateral sclerosis (ALS), used a system of blinks to select the right letters.
“It’s great to see the turnout,” Mr. Long said via that system.
Most of the time, he converses through a computer with a voice interface.
The ALS Raising Hope Foundation, which has hosted the annual event for three years now, was inspired by the Peru man, who was diagnosed in 2009.
It raises funds for research and treatment of neurological disorders, including ALS, and to increase awareness.
Jay LePage, who is president of the foundation’s Board of Directors, estimated between 400 and 500 walkers took part in Saturday’s event in Trinity Park.
“This is our biggest fundraiser of the year,” he said, citing “the tremendous amount of sponsors, plus the walkers, raising money.”
“This is a really hopeful time for patients and families with neurodegenerative diseases," Dr. Merit Cudkowicz of Massachusetts General Hospital told attendees, many dressed in bright turquoise T-shirts in Trinity Park.
Cudkowicz is chief of the hospital's Neurology Department, a professor of neurology at Harvard Medical School and director of the Neurological Clinical Research Institute.
Since such diseases are related, she said, “we think any major discovery in one will help all of them.”
Although scientific progress is being made in the field, however, Cudkowicz said, major sources of funding are drying up at the same time.
“This is a critical time for funding. The government is cutting back on funding, and pharmaceutical companies have cut back on neuroscience.”
Finding the money to capitalize on the scientific progress and explore new ideas is therefore critical, she said.