After living for 26 years with the debilitating effects of multiple sclerosis, David Kasell (SHS ’86) was ready to participate in a stem cell study at the Tisch MS Research Center of New York, one that held real promise for neurological improvement and increased mobility in MS patients.
But in early February, because of the COVID pandemic, funding that had been earmarked for Kasell’s compassionate care group — people with MS for more than 15 years and for whom there are no other comparable treatments — was no longer available.
“I was disappointed,” said Kasell, an attorney who moved from Brooklyn to White Plains after the pandemic began.
The good news, however, was that patients able to pay their own way, $42,000, to process, culture and administer the treatment, could receive the stem cells that had already been harvested from their bone marrow and could continue with the study.
Uncomfortable soliciting funds directly, Kasell looked into GoFundMe (GFM), a crowdsourcing platform that allows people to raise money to meet life challenges like accidents and illnesses.
“I just thought I’d put it out there,” said Kasell.
Within 72 hours, Kasell raised all the money he needed from donations, both large and small, from scores of private donors that included dozens of alumni from his Scarsdale High School graduating class of ’86. The private social media group Scarsdale Buzz bustled with updates about the success of the drive.
“It was amazing. People I haven’t heard from in ages are contributing to this campaign. My mom, I tell her she’s got to hydrate. She’s been crying all day and night because this has been so moving for her,” Kasell said.
GoFundMe is a “gifting site,” rather than a 501(c)(3) nonprofit organization, so Kasell is grateful for the contributions, especially since they are not tax deductible.
As of Wednesday, the site, David’s Stem Cell Treatment, received 167 donations, ranging from $10 to $7,500. He is pleased with the results.
“GFM made this possible. I didn’t have to go to these people [directly] and ask. I used to do nonprofit fundraising and I’m happy to do that. But to ask for money for yourself, that’s a hard thing to do.”
Kasell is scheduled for an evaluation on March 19 to prepare for the trial, which will take place in July or August. The compassionate care group will need $1 million to fully fund their trial.
Kasell has every reason to be hopeful about the second phase of the research study, after some positive outcomes from the first.
Of 20 patients enrolled in the FDA-approved study in 2013 conducted by Kasell’s neurologist, Dr. Saud Sadiq, 75% demonstrated neurological improvement, including at least one person who is no longer using a wheelchair.
“The study showed roughly a bell curve: 20% had no effect, 20% had a major effect, and 60% had a mild to moderate effect,” said Kasell. “That means that 80% were having some sort of effect.”
Kasell already has commitments to cover the full cost to enter the summer research trial and will contribute any surplus to another MS candidate in the compassionate care program.
“There are people in this group who can’t afford the treatment.”
Kasell, who is divorced and the father of a 13-year-old son, is inspired by progress in the field, but which always takes money.
“I would love to find somebody who thinks this is a really compelling story, who believes in stem cells and the promise they hold and will pick up the funding for it,” he said.
During the procedure, Kasell will be administered his own stem cells through spinal injections three times, about two months apart. If there is noticeable improvement, he said, “they’ll administer more.”
“It’s almost like you have an incentive to be doing well.”
“Stem cells have been considered the holy grail for a long time,” he added, “and for good reason. If we can figure out how to harness that power, it would probably fix me.”
In the meantime, Kasell is grateful for the generosity of his SHS alumni donors and looks forward to a class reunion.
“After this fundraising thing, and when this whole COVID storm ends, a whole bunch of people from high school want to get together. It’s really lovely.”