When Malvern Prep hosts St. Joseph’s Prep in an APAC game on Thursday, February 9 at Ice Line, the evening will be about more than just hockey.
The game itself will be the centerpiece of a dine-and-donate event to raise funds for the effort to find a cure for Rubinstein-Taybi Syndrome, or RTS, a rare genetic syndrome.
RTS is a genetic syndrome which is typically a mutation of the CREBBP or EP300 gene. Those with RTS have an intellectual disability along with both developmental and growth delays. Some have other medical issues as well.
Malvern Prep coach Bill Keenan’s 3-year old son Connor is afflicted with RTS, which occurs in one of every 125,000 children.
“It’s a spectrum,” Kenan said, “so some kids have more impediments than others.
“My son was diagnosed last year, so, we’re trying to bring awareness to it for a good cause. We’ve met some other families with the syndrome and we want to do our part in raising awareness and giving back.”
The dine-and-donate event will begin at 7 p.m. and continue until 10:30. The game between the Friars and the Hawks will begin at 8:30.
Keenan’s entire family will join him in a ceremonial pick drop including his wife Sarah, Connor, and Connor’s siblings. 8-year old J.J. and 6-year old Olivia.
Keenan is grateful for the support he and his family have received from the Malvern Prep community and the area hockey community.
“We’re lucky to have such a great community from Malvern Prep and the hockey community that wants to help us raise awareness,” he said, “and we’re looking forward to a good night. This is our first year obviously having something like this and we’ll build onto it. Maybe have some other families come out in the future, and overall we’re just looking for it to be a fun night where everybody can learn and bring awareness.”
Keenan feels an obligation to be a voice for families dealing with RTS.
“As most people know, I don’t like to be in the spotlight,” he said, “and my family does not like to be in the spotlight. At the end of the day this event isn’t just about Connor. It is for all those with RTS and being able to educate others is a big part of what me and my family are trying to do.”
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