Timed to coincide with National Gaucher Awareness month, the National Gaucher Foundation hosted its annual event in New York City on Oct. 27. Attended by nearly 200 patients, family members and physicians, the event featured a question-and-answer session with an expert panel of specialists, the launch of the new Ambassadors Cohort, a Teen Meetup connection and a short film about living with Gaucher disease.
Gaucher is a rare genetic disorder. Type 1 of the disease is the most common in Ashkenazi Jews, with 1 in 10 of this population being carriers. While currently no cure exists, with the proper treatment, many of the symptoms can be successfully managed.
“We want Gaucher patients to know that they are not alone, and that an entire nationwide network is here to help them live their lives to the fullest,” said Amy Blum, CEO of the National Gaucher Foundation.
The Ambassador Cohort, made up of community members who either live with Gaucher or have family members affected by it, is helping raise awareness about the disorder.
One of its new ambassadors, Nate Kleytman, 22, said “as someone who spent almost a decade of my childhood struggling through severe pain and unnecessary procedures due to continued misdiagnoses, it has become a personal calling of mine to spread the word about Gaucher so that people know of the disease, get tested, and so that those who are diagnosed can see that a bright future still awaits them.”
Teen Meetup was designed to connect youth between 12 and 17 who are living with Gaucher.
Event attendees were also privy to the premiere showing of “One of Those Dates,” a short film by Israeli filmmakers Itai Amidor and Itay Segal that brings the disease to the forefront of a conversation on a first date.
