The Greenberg Family: Parker’s Cure
Kimberly and Jason Greenberg’s oldest daughter Parker was born with HIST1H1E syndrome, though they didn’t know it at the time— Parker was born in 2016, and the syndrome wasn’t discovered until 2017. “First, she failed her hearing test in the hospital, so we were meeting with specialists,” explains Kimberly. They were sent to an eye doctor, then a neurologist, then a geneticist, who eventually ran a genetic sequencing panel on the whole family, all without conclusive answers. It wasn’t until just before Parker’s second birthday that the Greenbergs got a call saying that Parker had a syndrome called HIST1H1E, which had been discovered six months prior. The condition causes severe intellectual and physical disabilities and requires lifelong care. At the time, Parker was the eighth known case worldwide.
Kimberly says doctors told them that “with rare, orphan diseases, there’s nothing to be done.” That didn’t sit right with her. “I don’t have a personality to take that as the final answer and go about life,” she says. “We were like, let's start a nonprofit. We're not going to ‘do nothing.’ The money might not go far—a couple hundred thousand dollars is not going to cure our syndrome. But it made us feel a little bit better about helping our daughter, and helping other children,” says Kimberly. They reached out to a researcher, Dr. Yong-Hui Jiang, who coincidentally was about to join Yale as Chief of Medical Genetics. He took a "miraculous" interest in HIST1H1E, and, knowing their funds would support his research, the Greenbergs launched the HIST1H1E Genetic Syndrome Research Foundation—known around Westport as Parker's Cure—a 501(C)(3) raising money for clinicians studying the syndrome.
Their marquee fundraising event, Parker’s Cure Bowling Bash, takes place in January, where they rent out Bowlero in Norwalk, and this month they'll also host Remi's Color Run on August 25th, a free community event from 10-12 at the Saugatuck Elementary School track, to benefit Parker's Cure. To date, they’ve raised more than $500,000 for Dr. Jiang’s lab, thanks in large part to the generosity of the Westport community. “[Having a foundation] is a way that we can feel like we're honoring Parker on a day-to-day basis,” says Kimberly. Jason agrees. “It gives you a little bit of comfort, knowing that, whatever initiative you work on, it’s making a difference.”
To learn more, visit parkerscure.org
The Greenfield Family: Hearts In Harmony
When Shea, now 2, was born, she “basically flat-lined” at birth, says her mom, Kira Greenfield. Doctors were able to stabilize her, but on her second day of life, she was soon near cardiac arrest again. An EKG showed an abnormally long QT interval, the electrical recharge your heart takes between beats. A blood test confirmed Shea had Long QT Syndrome, and a rare type at that, since neither Kira nor her husband Mark were carriers of it, and the condition usually has a genetic link.
Last year, Kira and Mark connected with a specialist in Long QT at the Mayo Clinic, Dr. Michael Ackerman, when Shea was 8 months old. “He mentioned what he was doing in his lab to work on a cure and better treatments. I said to him ‘we need to do more. I feel powerless.’ I asked if we could throw an event and have the funds go to his lab.” The answer was yes, and the Greenfields got to work on Shake It For Shea, a dance party at Fairfield’s Warehouse at FTC benefitting Dr. Ackerman’s Sudden Death Genomics Lab. The event was a huge success, and Kira realized that she didn’t want it to be a one-time thing. “I decided: What’s more meaningful than running a foundation?” The Hearts in Harmony Foundation, their 501(C)(3), officially launched in November 2023, and the second Shake It For Shea, held this past June, raised $440,000 for Dr. Ackerman’s lab. “It might be called Shake it For Shea, but we’re doing everything we can to help not just Shea, but so many other people have the best quality of life and hopefully live as long as possible. I wake up now with so much hope.”
To learn more, visit heartsinharmonyfoundation.org
“We can feel like we're honoring Parker on a day-to-day basis.”
"I wake up now with so much hope."