There is no cure, or any effective treatment, for amyotrophic lateral sclerosis, also called Lou Gehrig's disease, the disease Neil Alexander was diagnosed with in June 2011.
So when Mr. Alexander and his wife, Suzanne, founded LiveLikeLou.org in March 2012, they knew that part of their organization's mission would be to fund ALS research, with the goal of helping researchers discover a treatment to slow the progression of a disease that, on average, causes death two to five years after diagnosis.
"If it's not in time for me, that's fine," said Mr. Alexander, 48, of O'Hara. "We're trying to get it for the next guy."
A $100,000 grant to the University of Pittsburgh School of Medicine will support research by longtime ALS researcher and Neurological Surgery Department chairman Robert Friedlander. It could help put together more of the pieces to solve the puzzle that is ALS, a disease that affects the motor neurons and eventually causes paralysis and difficulty swallowing and breathing.
The gift is a joint one, with half the funds coming from the Pittsburgh Foundation and half from LiveLikeLou.org, a donor-advised fund of the foundation. It covers the cost for two years of hiring postgraduate research associate Yuanyuan Jiao to work with Dr. Friedlander in the University of Pittsburgh's Neuroapoptosis and Translational Therapeutics Lab.
The work that the new grant will support involves identifying what cell pathways ALS affects and then discovering what treatments can block the death of those cells. Research into ALS has long involved studying the disease in mice, but Dr. Friedlander believes greater advancements are possible with new technology that allows researchers to study the disease in cells developed from human patients who have ALS.
Mr. Alexander, in addition to his financial donation, is also one of the ALS patients who has donated skin samples for Dr. Friedlander's cell research. It's one of three trials Mr. Alexander is participating in at Pitt.
Eventually, Dr. Friedlander believes, a treatment for ALS will be discovered that uses a multi-drug regimen, or a "cocktail approach" similar to what has been used to treat people with AIDS or types of cancer.
With federal funding for health research limited, the grant comes at a good time, Dr. Friedlander said.
"Gifts like these are incredibly important to allow us to advance our work in a more meaningful way," he said, adding his thanks to Mr. Alexander.
"He's a giant. He's an incredibly selfless person," Dr. Friedlander said.
LiveLikeLou.org, since its founding, has raised $560,000 through fundraising events such as bike rides and golf tournaments, Mr. Alexander said. The organization has made donations to support patient care through the Western Pennsylvania Chapter of the ALS Association and has established a college scholarship fund for children of people with ALS, among other initiatives.
The latest grant "provides substantial funding we believe will help to advance medical research into this devastating disease," said John Ellis, spokesman for the Pittsburgh Foundation, which has supported LiveLikeLou.org since its inception.
"The foundation also recognizes and commends Neil, himself an ALS sufferer, and his family, for their courage and determination in successfully bringing to the forefront public awareness of ALS, with the aim of furthering treatment and knowledge of the disease," Mr. Ellis said.
Kaitlynn Riely: email@example.com or 412-263-1707.z First Published October 7, 2013 8:00 PM