By Sarah Yamashita
Kevin Berry spent 27 years fighting fires with the Montclair Fire Department, before retiring as a battalion chief to spend more time with his family.
He began enjoying his retirement in Whippany by playing hockey and golf several times a week and attending his daughter’s sports events.
But then he began suffering from early symptoms of Amyotrophic Lateral Sclerosis. ALS, commonly referred to as Lou Gehrig’s disease, is a disease of the nervous system that eventually disrupts vital muscular functions, such as those needed to eat, breath, and speak.
A lieutenant in the Montclair Fire Department, Michael Lizza, says this about his former chief and longtime friend:
“I owe so much of my own career success to Kevin and his commitment to helping me along. I learned just as much if not more from him about life outside of the job. He’s the kind of person that you just want to be around, and seeing him suffer with this disease has been so tough. I’m praying that he and so many other ALS patients can get the help that they need because we need him around a lot longer.”
“My dad has always been my hero,” says Kevin’s daughter Haylee, 21. “Through the years, he has taught me so many valuable lessons about life that have made me the person I am today.
“He has always tried his best to help others, whether that is helping his neighbors shovel their driveways during a bad snowstorm or running into burning buildings to save lives. He is selfless, courageous, bold, and strong.
“Thinking of everything he has sacrificed for the betterment of others, I can’t imagine why he shouldn’t be able to access the necessary treatments for his condition. He is a fighter and has already done the impossible in fighting ALS, but he can only do so much without treatment,” she says.
In keeping with his lifelong mission of helping others, Kevin agreed to make a video of himself to bring attention to two promising ALS drugs. The video launched online on May 20, the same day as the March on Washington for ALS.
Video by Brett Revet:
NurOwn and Prosetin, referenced at the end of the video, are two drugs that show great promise for ALS patients.
NurOwn is a cell-based therapy developed by BrainStorm Cell Therapeutics Inc. (BCLI). Writing in ALS News Today, Ines Martins explains that this treatment involves extracting a patient’s mesenchymal stem cells (MSCs) from the bone marrow, expanding and maturing them, and then injecting them back into the patient’s spinal canal. These cells work to promote nerve tissue growth and survival.
In its Phase 2 trial, NurOwn slowed the disease in a subset of ALS patients with a fast-progressing form of the illness. The cell-based therapy is being tested in a Phase 3 trial with 200 participants across the U.S. NurOwn also is being tested in a Phase 2 trial on people with progressive forms of multiple sclerosis.
The development of Prosetin has been funded by a nonprofit organization called Project ALS. Columbia University was among the grant recipients.
According to the Project ALS website, it took Columbia researchers years to create Prosetin, an oral drug that penetrates the brain. It uses cells from actual ALS patients, and it works by bathing motor neurons (the cells targeted for destruction in ALS) in its beneficial properties.
Of all the research funded by Project ALS to date, Prosetin has proven to be the best in its class in rescuing motor neurons and improving patients’ chance of survival.
Before COVID-19 struck, Project ALS was on track to bring Prosetin to a Phase 1 clinical trial by this summer. Like everything else, the pandemic has caused some delays, but according to an April 7 Facebook video update by Valerie Estes and Erin Fleming of Project ALS, they remain hopeful they can initiate the Phase 1 clinical trial sometime this year.
To help get Prosetin and NurOwn to Kevin and other ALS patients, you can donate to Project ALS, and you can spread the word about NurOwn by posting on social media, writing letters to Congress, and signing petitions like this one.
To aid Kevin in his fight against ALS, please donate to his GoFundMe page.
Former Morristown Green correspondent Sarah Yamashita attends Smith College. She is Kevin Berry’s niece.
My first symptoms of ALS occurred in 2011, but was diagnosed in 2013. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then i decided to try alternative measures and began on ALS Formula treatment from Akanni herbal centre , It has made a tremendous difference for me (Visit www. akanniherbalcentre .com). I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.