The first major project to be funded by the Livermore Laboratory Foundation aims to create an organization that is better able to advance medical progress in the battle against ALS – amyotrophic lateral sclerosis, often called Lou Gehrig’s disease.
Under Foundation support, Lawrence Livermore National Laboratory will work to establish a consortium of universities, research laboratories and clinical institutions to identify research priorities and share information on the neurodegenerative disease.
In addition to being the Foundation’s first major research project, it is thought to be the first ALS-focused effort at the Laboratory.
An initial $100,000 in funding will go toward organizing rather than actual research, creating a collaborative effort to “play to the (consortium) partners’ strengths,” according to Foundation president Dona Crawford, a former LLNL associate director.
“Collectively we can advance science in ways not possible as individual organizations.”
It is not clear whether LLNL may eventually be asked to engage in clinical ALS research, but it has powerful technical resources to apply if it is asked, as it has done for cancer, heart disease, traumatic brain injury and many other conditions.
These include computer science capabilities and biomedical skills that could someday help identify biomarkers, biological molecules related to disease susceptibility and response to possible therapies.
INCURABLE AND PROGRESSIVE
ALS is incurable and progressive. There is no known cause, although as many as 10 percent of cases are thought to be genetic in origin.
Time to death following diagnosis is usually 2 to 4 years. Victims lose the ability to control their muscles, which means they may lose the ability to move, speak, eat and breathe as time passes.
ALS is considered a rare disease. Authorities believe there are 15,000 to 30,000 U.S. patients at any given time.
That relatively small number does not attract the level of attention from the biomedical industry that much more common ailments like cancer and heart disease do, each with millions of patients. ALS activists complain that promising new therapies are being ignored.
Last week, a group that models itself on AIDS activists of the 1980s protested at FDA headquarters in suburban Maryland, claiming that pharmaceuticals targeting other neuromuscular diseases were being approved while a promised fast-track for ALS treatments had not materialized.
They charge that more than $100 million in funds raised during the so-called ice bucket challenge five years ago, when thousands of people solicited donations by having ice water dumped over them, have not been applied as promised toward ALS research and treatment.
Whether or not the activists’ complaints are valid, today’s ALS treatment options are few and serve mainly to alleviate symptoms. They typically prolong life by no more than a few months.
The Foundation-supported project at LLNL aims to breathe new life into both the basic science of identifying ALS biomarkers and clinical efforts to coordinate possible therapy improvement.
‘NEUTRAL HONEST BROKER’
Foundation President Crawford points out that as a national laboratory, LLNL can be a “neutral honest broker” for a large consortium.
The laboratory does not compete with industry, has no commercial conflicts of interest and has long been accustomed to handling and protecting “sensitive and proprietary information from the government, industry and other partners.”
One who is cheering for the success of the project is Michael Piscotty, an LLNL computations employee who lost his wife, Gretchen, to ALS last year.
The Piscottys’ son, Stephen, is an Oakland A’s outfielder. He was born in Livermore and went to high school in Pleasanton, where his father still lives.
Together, father and son established a charitable foundation, ALS CURE, to honor Gretchen’s memory by working toward a cure for the disease.
ALS CURE has two goals, according to its website.
One is to stimulate research aimed at identifying ALS biomarkers that can be shared by pharmaceutical and medical institutions as they work to understand the cause and progress of the disease as well as its response to treatment.
The other goal is to create an incentive for companies to work on finding a cure for an ALS patient population numbering in the thousands rather than the millions. The ALS CURE website envisions a “large cash grand prize” to be funded through philanthropy and awarded when a cure is confirmed.
ALS CURE is contributing an additional $100,000 to the Livermore Lab Foundation to support its ALS project, Piscotty said.
In the meantime, son Stephen, the A’s outfielder, was honored last month as the 2019 recipient of Major League Baseball’s Hutch Award for his efforts to raise support for ALS awareness in his mother’s honor.
The award is given by Seattle’s Fred Hutchinson Cancer Research Center to honor a player who “best represents the courage and dedication” of the Seattle native for whom the research center was named.
That was Fred Hutchinson, a standout pitcher and later manager for several professional baseball teams before dying of lung cancer at age 45.
As if to confirm Piscotty’s fitness for the award — for responding constructively to medical adversity – he has returned to the A’s starting lineup after undergoing surgery last week for a malignant melanoma on his ear.
As a fundraiser, ALS CURE has planned a dinner and auction on July 15 at the Blackhawk auto Museum with Stephen Piscotty and other Oakland A’s in attendance.
Future fundraisers include an August 12 charity golf tournament, dinner and auction at Blackhawk country club and an August 22 Oakland A’s game versus the New York Yankees with ticket proceeds to benefit ALS CURE and other ALS organizations.
More information about these events as well as about ALS CURE and its activities is online at https://alscure.net/.