Margate CFO Lisa McLaughlin, center, presents a check to Mark and Eileen Berardi for their advocacy for an experimental ALS treatment. Also pictured, from left, is Commissioner John Amodeo, Mayor Michael Becker and Commissioner Maury Blumberg.
By NANETTE LoBIONDO GALLOWAY
MARGATE – Eileen Berardi and her husband Mark, an ALS patient, will be marching at the White House March 30 to petition the president to fast-track a drug that proponents say can extend the lives of those afflicted with the fatal disease.
On Thursday, March 5, Margate Chief Financial Officer Lisa McLaughlin presented the couple with a small donation to support AxeALS StevensNation, a group that promotes awareness of the disease and a new, but promising treatment currently under review by the Federal Drug Administration.
The donation represents the proceeds of a raffle held during the Downbeach municipal employees’ annual Health Fair, held at the Margate Municipal Building last October. The event, which is held annually for employees of Ventnor, Margate and Longport, supports organizations that advocate for health issues locally.
Although the donation was only $380 (McLaughlin said she wished it could be more), it will go a long way to bring about public awareness about a randomized, double-blind Phase 3 clinical trial for a new drug, NurOwn, which is being manufactured by Israeli pharmaceutical company, BrainStorm Cell Therapeutics. The drug shows promise in extending and improving ALS patients’ quality of life, but it may take years for clinical trials and FDA approvals to get the drug to market.
First responder co-workers of former football player and firefighter Eric Stevens, 29, of California, who was diagnosed with ALS shortly after his wedding, started AxeALS StevensNation to bring about awareness of the drug’s benefits. Stevens and wife Amanda went to school with the Berardi’s daughter-in-law at University of California Berkeley.
Reflecting firefighters’ values of being there for others, AxeALS is advocating to get the FDA to fast-track the stem cell transplant drug.
“My hope is to shed light on this underfunded disease, start a debate and motivate people in power to make changes that allow terminally ill patients to access treatments still in trials but proven to be safe,” Stevens said on his website, stevensnation.com.
The drug has been under investigation for about 10 years, Eileen Berardi said. The stem cell therapy is also being tested for Huntington’s and Parkinson’s disease, as well as for those with autism spectrum disorder.
“We can’t say how many of the 100 people who actually received the drug have been helped, but there’s a ‘right to try’ law that says victims of fatal diseases can try the drug,” she said.
There’s still one year left for the Phase 3 trial, but indications are so promising, other patients should be able to receive it, Berardi said.
“Our goal is to act up in Washington, D.C. like they did for HIV,” Berardi said. “We are going to the White House to petition for the trial to be pushed through.”
After the check presentation ceremony, the Berardis, who reside in Somers Point, went to Bocca Coal Fired Bistro to celebrate. During a discussion with the Bocca team, a new plan was hatched to assist the Berardis with medical expenses.
Bocca will host a fundraiser 1-4 p.m. Sunday, April 19. The event, which is $20 per person, will offer a buffet and cash bar at happy hour prices.
Mark Berardi, 69, was first diagnosed with ALS when he was still employed at Tropicana, where he worked for 40 years as a dual rate pit boss.
“He was diagnosed three years ago,” his wife said. “It started when he fell at work and all his mechanics were off. Then he got a dropped foot. It took six months to get a diagnosis.”
A second diagnosis from doctors at Thomas Jefferson University Hospital of Philadelphia and a third from Hospital of the University of Pennsylvania confirmed their fears. Mark was given 18 months to live and given infusion therapy to extend his life several months, but he developed an infection and can no longer tolerate the treatment.
He is immobile from the waist down.
Amyotrophic lateral sclerosis or ALS, a progressive neurological disease, affects nerve cells in the brain and spinal cord, causing loss of muscle control. It is known to many as Lou Gehrig’s disease, after the baseball great who died of the disease.
According to the ALS Association, the progressive degeneration of motor neurons eventually leads to death. There is no known cure. Life expectancy is three to five years. About 5,000 people are diagnosed annually and about 16,000 Americans are living with the disease at any given time.
“Doctors say it is progressing to his core, then eventually to his diaphragm, which will require a respirator, or it could progress to his arms and hands,” she said.
Eventually, he will need a feeding tube.
There’s no known cause for ALS, and one in six military members are being diagnosed, which is alarming, she said.
Mark would like to get the transplant, but he is not eligible, she said. The bone marrow transplant is reserved for those 18-60, but the couple will continue their fight to get the drug fast-tracked to help others.
The procedure involves extracting bone marrow from the spine, medicating it with NurOwn and re-introducing medicated stem cells to the spinal cord.
Because the treatment is so promising, Eileen said she and her husband would do everything they can to see others afflicted with the disease have access to the procedure as soon as possible.
“Lives depend on it,” she said.
For more information about the fundraiser, contact Glenn Rothstein at 609-839-0191. Tickets will also be available at the door.
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