Last summer, Mollie Elkman noticed her mother-in-law was experiencing alarming health symptoms.
Elkman’s and her family immediately brought her mother-in-law to Dr. Terry Heiman-Patterson, director of the Center for Neurodegenerative Disorders at Temple University.
A series of tests revealed the heartbreaking truth a month later; her mother-in-law had amyotrophic lateral sclerosis, or ALS, due to a gene mutation that allows the disease to be passed down to offspring.
In hopes of advocating for patients and families dealing with ALS, Elkman and her husband Daniel started the ALS Genius Fund. The fund raises money for the ALS Hope Foundation to support Temple’s MDA/ALS Center of Hope and Neuromuscular Research Laboratory. The money from the fund supports a designated team of “geniuses”, or researchers working with the fund.
The name “Genius Fund” emphasizes two things; the role of genes and genetics in ALS, and the brilliance of the medical professionals working for a cure Elkman said.
Elkman approached the ALS Hope Foundation asking if they could do something for research that would focus on the gene, said Jamey Piggott, director of development and community outreach at the foundation.
The fund has raised more than $20,000 since August 2019, which Piggott said is “unheard of.”
“We don’t want to tell another sad story about ALS,” Elkman said. “What we wanted to do instead, was shine a spotlight on these genius doctors and scientists who are really paving the way for treatment and a cure.”
Being a rapidly progressive disease, ALS typically causes death within 34 months when the patient is first diagnosed, Heiman-Patterson said. Eventually, the disease takes over the body.
“It’s a progressive weakness,” she added. “It can start in an arm and a month later the other arm is involved.”
Heiman-Patterson, the “Head Genius” of the fund is also the director of the MDA/ALS Center of Hope, and a neurology professor at the Lewis Katz School of Medicine.
The fund brought together a number of medical professionals from throughout the city to help collaborate on fighting ALS, she said.
“We can’t be provincial, we have to drop down the barriers,” Heiman-Patterson said. “If we’re gonna make progress we have to work together, we don’t want reduplication. We want to share ideas and move things forward.”
The money from the Genius Fund goes to the ALS Hope Foundation and The Center for Hope to also give patients care, Heiman-Patterson said. Part of the funding also goes towards the labs for new equipment.
Guillermo Alexander, a professor in the department of neurology at Drexel University College of Medicine and the researcher with the fund, are currently testing on mice to see how their genes react to ALS mutations.
Elkman wants the doctors to be able to dedicate their time to find a cure and helping patients instead of fundraising.
“There’s something wrong with the medical system when these brilliant doctors have to raise money in order to provide the standard level of care,” Elkman said.
Along with the research being done in the labs, the Center for Hope emphasizes providing clinical care and educating families and patients on what it’s like to live with ALS.
The disease can make life hard for patients and their families, giving them a “feeling of helplessness,” Elkman said. But, she believes the best way people can help fight it is by supporting the people who have the ability to make a difference.
“I personally can not cure ALS but I can help the people who can,” Elkman said.