NISKAYUNA — Ten food trucks, warmer than expected weather and a good cause drew more than 2,000 people to Zanner Road Soccer Park, located behind Craig Elementary School, on Sunday. By 4 p.m., those attendees raised approximately $10,000 to help fund research for Liv4TheCure.
One of the trucks in attendance was Rob Carmel’s Rollin Smoke truck, which had so many customers, it ran out of smoked chicken wings during the festival.
Liv4TheCure is the nonprofit organization created by Niskayuna residents Stephanie Forman and her husband, Aaron Foreman, to help find a cure for large chromosome deletion syndromes, including Wolf Hirschhorn Syndrome, which afflicts their five-year-old daughter, Olivia.
“The turnout has been amazing. The environment has been amazing, and it’ll be bigger and better next year,” Liv4TheCure President Stephanie Forman said.
Aaron Foreman, who owns a company that creates prescription software for physicians, said science needs a push in the right direction to help create research pathways for large chromosome deletion syndromes. He said his daughter is missing about 7.5 million base pairs of genes at the end of her fourth chromosome, which provides a double meaning for the four in Liv4TheCure.
“My understanding is that very often scientists have very short careers. They want to make an impact and they want to use the toolsets that are in place today in order to make that impact. Unfortunately there isn’t a whole lot of stepping back and looking at the whole picture holistically,” he said. “We need to create new toolsets in order to facilitate new treatments. There are folks out there that are interested in true science and true creativity, but they’re very hard to find.”
Olivia Foreman was born prematurely and showed signs of Wolf Hirschhorn Syndrome before she was six months old. While Stephanie said large chromosome deletion disorders can be fatal, children who live until the age of two can typically survive the disorder. Even though she has achieved that milestone, Stephanie not only says that Olivia has already dealt with seizures, low muscle tone, adult mental and intellectual delays, and organ problems with her heart, liver and kidneys, but also believes Olivia’s life will always be in danger from a fatal seizure, unless an effective treatment can be developed.
The Foremans said a lot of scientific research funding is currently going into a technology called CRISPR, which, in short, can be used to edit single-genes and potentially provide cures for disorders such as sickle cell disease.
However, CRISPR, as it’s currently being used. won’t work for Wolf Hirschhorn Syndrome or other large gene deletion syndromes.
“If you went through the [deleted genes in my daughter] and replaced one or two genes, no one can predict what that would do. If you tried to fix Wolf Hirschhorn Syndrome with single gene therapies, in theory you’re creating a brand new disease,” explained Aaron.
Stephanie Foreman said research funding hasn’t been available for multiple gene therapies because current science has no forward research pathway for how to fix them.
Aaron Foreman said the money raised Sunday will help to fund a research conference, gathering scientists on the Liv4TheCure board and others who will attempt to devise a strategy for how to find a cure to multigene disorders. Liv4TheCure will then use that research strategy in its application for a $500,000 grant from the Chan Zuckerberg Initiative. Aaron said he’s hopeful the grant will be awarded by the end of this year.
“Essentially the next level of CRISPR is what we’re looking for,” Stephanie Foreman said.
More information about large chromosome deletion syndromes is available at liv4thecure.org, which also has links explaining how to donate money to the cause.