PHILADELPHIA (CBS) — There’s new help in the fight against ALS. A Genius Fund, started here in Philadelphia, is aimed at research looking for better treatments for the disease also known as Lou Gehrig’s Disease.
Thursday night at the Franklin Institute, the Genius Fund will hold it’s first event called Meet the Geniuses, the people leading research on ALS. The inspiration started with a shocking diagnosis.
Mollie Elkman and her husband, Daniel Gerson, never thought they’d be so involved with brain research, but it’s now a life mission.
“It’s gonna impact, potentially, every generation,” said Gerson, who’s mom has ALS.
The mission is to save their family and others impacted by ALS.
Gerson’s mom has a form of ALS that runs in families. Doctors explained that Gerson and his children are at risk.
“It was like a moment that changes your life forever, literally in one moment,” Elkman said.
“Sheer panic, right. So you not only have concern about your mom, but you automatically think to yourself, your siblings, your kids,” Gerson said. “This is a disease that destroys the brain and body and that’s a very scary scenario to think about and what that means.”
They turned panic to action, creating the Genius Fund to support the ALS Center of Hope at Temple University.
“We are so grateful because it will accelerate some of our research,” said Dr. Terry Heiman-Patterson.
Heiman-Patterson is the head of the ALS Center of Hope, one of the first multidisciplinary ALS clinics in the country.
“It’s a very exciting time, our clinical trials are really active and we’re doing personalized trials now,” Heiman-Patterson said.
Elkman and Gerson’s Genius Fund will hold its first event inside the brain exhibit at the Franklin Institute.
“To shine a spotlight on the doctors and scientists that are really leading the way in finding treatment and a cure for ALS,” Gerson said.
“This is one of the major neurodegenerative diseases that affects the brain and the motor system in the brain, so I think it’s very apropos to do the kick off in the brain exhibit,” Heiman-Patterson said.
There are over 30 different genes linked to the familial form of ALS. Doctors are hoping to find specific treatments for certain strains but there’s also a sporadic form of the disease that has no genetic connection.