Farmingdale Mom Battling ALS Encourages Social Media Challenge

FARMINGDALE, NY — A Long Island mother is making a special request for Mother's Day: anyone with overgrown hair as a result of the coronavirus gets a funky shave as part of a social media challenge.

Carly Colvell, 40, of Farmingdale, is a mother of three. She has amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease, a 100 percent fatal neurodegenerative disease. Colvell said there's hope in the form of NurOwn, a therapy developed by BrainStorm Cell Therapeutics that uses a mesenchymal stem cell platform to treat ALS patients. NurOwn clinical trials are in phase three and have been going on for a decade; the third phase began in 2017, according to BrainStorm's website.

The therapy, injected into a muscle or the spinal canal, aims to help dying nerve cells survive by fighting the neurodegeneration process that causes ALS, according to ALS News Today. This has given Colvell hope.

"Imagine having a disease that progressively gets worse every day," Colvell told Patch. "When you wake up each morning, you don’t know if you’ll be able to walk, speak, eat or breathe. The sad reality is once ALS robs you of one of these abilities, you do not get them back. NurOwn is the only treatment to-date that has shown signs of disease reversal. That means with this treatment, I could be able to walk normal again. For patients breathing difficulties, they could breathe easily again. Getting this drug would truly be a miracle, and a game changer for me and the thousands of Americans dying of ALS."

ALS patients and advocates have been active in Washington D.C. for years, diligently working with Congress and senators to stress the urgency of the time-sensitive approval of NurOwn, Colvell said.

A newfound motivation was sparked by the coronavirus. Seeing the Food and Drug Administration swiftly approve potential COVID-19 treatments such as remdesivir for emergency use authorization gave ALS-cure advocates hope the same could be done for NurOwn — either through FDA approval or an executive order by President Donald Trump.

"Our voices are being heard," Colvell said. "However, we need an extra push, and that’s how the social media campaign came about."

Artists at Paint for a Cure, an organization launched by fellow ALS patient Eric Weinbrenner, that supports those with the disease by providing them medically accessible housing, launched the #ShaveALSChallenge. The challenge was started to bring awareness to the fact ALS patients are in urgent need of NurOwn being approved, Colvell said. It came just in time for May — ALS Awareness Month.

"For me, I thought the shave challenge was a perfect way to get the community to rally behind us," she said. "Those unruly quarantine hairdos could be cut and styled for a good cause. And that’s exactly what’s happening!"

The instructions are simple: Record, shave and post on social media with three hashtags: #shaveALSchallenge, #NurOwn and #FDA. Once that's done, nominate three others to spread the word.

"Family, friends and supporters are going all-in," Colvell wrote on an online journal entry. "Kids are getting a kick out of trimming their parents. The grown-ups going for crew cuts, mohawks, funky hair colors, leg shaving and the pups are even getting a buzz!"

A YouTube video features a message from Colvell, as well as photos of those who've taken the #ShaveALSChallenge.

Video posted by Gianna Losquadro

"In the past three weeks or so, we've seen how quickly the FDA can move in urgent situations with COVID," Colvell said in the video. "Why can't the FDA look at ALS, this terminal, 100 percent fatal disease, with the same urgency as it did for COVID?"

If you'd like, you can financially donate to Paint For A Cure, Colvell said.

Colvell was diagnosed with ALS last year. In summer 2019, she noticed weakness in her left hand while doing routine chores around the house, she said. She scheduled an appointment with an orthopedic hand surgeon thinking she would need carpal tunnel surgery.

"What I’d do to have carpal tunnel surgery...," she wrote.

Her life drastically changed over the next three months. She felt weakness in her hand, endless back pain, deep muscle aches, muscle twitching and jelly legs. It turned out to be ALS.

"ALS paralyzes the body, resulting in the inability to speak, walk, eat and breathe," she wrote. "It leaves the brain and eyes untouched. So we are aware of what’s going on, but can’t control it. What we can control is our outlook."

Colvell has had the support of family, friends, co-workers, doctors, nurses, therapists, healthcare administrators and others, she said.

"Life is short and cruel at times, but... I choose happy. I’d love for you to join me."