HINGHAM, Mass. (WBZ NewsRadio) — A virtual gala benefit, put on by non-profit volunteer organization Maddie’s Promise, will be held Friday evening to raise money to fight rare forms of pediatric cancer.
In May of 2019, Ann McCoy lost her 11-year-old daughter Maddie, of Hingham, Mass., to Rhabdomyosarcoma. It’s a rare cancer that affects muscle tissue.
“Some days I wish I never heard the word Rhabdomyosarcoma again,” Ann said. “Then I think, ‘I can’t do that. I have to help somebody, you know, I have to try.’ It’s a big task. It takes more than me but I have to try to make this different from somebody else’s family, and somebody else’s kids someday.”
Dr. Charles Keller of Children’s Cancer Therapy Development Institute said that because Rhabdomyosarcoma is so rare, there’s been a lack of clinical trials.
“The problem is there’s not enough kids to make a profit on developing a Rhabdo drug. And all the research in the world doesn’t get connected, necessarily, to the pharmaceutical companies or the clinical trials without the voice of the parents to go, ‘Let me tell you about Maddie,’” Dr. Keller said.
However, he said that Maddie’s Promise has brought about one clinical trial. It’s being conducted by Syndax Pharmaceuticals in Waltham, Mass.
"They make a drug for a breast cancer that they’ve been studying called Entinostat,” Dr. Keller said. “Entinostat rediscovered or turned off the main mutation found in Rhabdomyosarcoma.”
Dr. Keller is set to give a research update during the online gala benefit, called 'An Evening of Promise.' It will be held from 7-8 p.m. It is free to attend and anyone can register can do so by clicking here.
People who donate $100 will receive a "100 for a cure" Maddie's Promise hat by No Wake. Also, the first 50 people who donate $500 or more can get the Mixology Basket, which includes a signature craft cocktail kit for two, a pre-gala mixology session, a cheese and charcuterie board, and a special floral arrangement.
The event will be hosted by journalist Ally Donnelly, and will include performances by the band Back Nine and comedian Johnny Pizzi, as well as personal stories of inspiration.
“[Maddie] was a bright, loving, active child who played soccer, competed in gymnastics and was just busy living her life surrounded by friends,” Ann said. “When she passed away in May 2019, it was her friends and their parents who rallied to our support and were really the force behind creation of Maddie’s Promise. Pediatric cancer research is woefully underfunded, and gets only about four percent of public research funds dedicated to it annually. 'An Evening of Promise' is a fun way to raise the money we need to push forward creative research so that children who never had the chance to know Maddie might still feel the impact of her life and love.”
WBZ NewsRadio's Laurie Kirby (@LaurieWBZ) reports
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Photo: Maddie McCoy. (Courtesy of Ann McCoy)