“I have goosebumps. It’s all surreal.”
That’s how Claire Craven says her family feels about an event being planned this Saturday, Jan. 10 by the Wilton High School hockey teams to raise money for ALS research. The fundraisers are in honor of her husband, Eric, 47, who was diagnosed with the disease in April 2013. The Cravens’ three children–David, Amanda and Elizabeth–are all varsity hockey players, and the entire Wilton hockey community has rallied around them.
“Initially we were incredibly private about it. We wanted our children to adjust and deal, and be as normal as possible in their high school years. And honestly Eric had things he had to deal with. As a man, to be told you have ALS is not only physically daunting but also emotionally devastating. But the big change came with the Ice Bucket Challenges–that opened the floodgates. Everyone was talking about ALS,” Claire explains.
In fact it was a moment this past summer on a visit to Sports Authority that really showed the Cravens just how aware the public had become about the disease. Eric asked the manager to show him how to cut a jump rope for their son, David. Claire tears up recounting the memory.
“I’m watching my husband watch him, and I can see he’s thinking, ‘I’m so glad this man is doing this because I can’t.’ I said to [the manager], ‘My husband has ALS,’ and he looked at Eric, the way he extended his hand was a gift. He looked him right in the eye and said, ‘It was my privilege.’ That would have never happened without the Ice Bucket Challenge. There would never be an awareness. That was huge.”
In early September the family attended the Wilton High School’s ice bucket challenge, watching the teachers and students take part. Several WHS teachers donated to the Cravens’ choice recipient–ALS Therapy Development Institute (ALS-TDI), which directs 100 percent of the funds donated toward research.
But it was the Wilton High School varsity hockey coach, Brett Amero, who approached the Cravens about helping to raise even more awareness and money. David, 18, is a senior and their identical twin daughters, Amanda and Elizabeth, are juniors, and their hockey family began to rally around, planning an event designed to take the Ice Bucket Challenge in a new direction. The Cravens will be able to handle all of their own medical costs and have asked that everything raised be donated to ALS-TDI.
They’ve scheduled fundraisers for the days the varsity teams will take on their arch rivals–Ridgefield High School; the first event takes place this Saturday, Jan. 10. The game begins at 4:10 p.m. at the Winter Garden Arena in Ridgefield.
“It’s always the highest attended game. This is a wicked rivalry and a huge game. So it was a cool idea to say, ‘Hey we’re rivals on the ice and we’ll fight to the end to win, but off the ice we can come together as a hockey family and support each other, and raise funds for research,’” Claire says.
Special uniforms have been ordered for the players, and Blue Line Sports in Darien has donated ribbon helmet stickers for the players with Eric’s initials. And the coach has said he wants to make this a yearly fundraiser to continue to honor him–“and all the people that struggle with ALS,” Claire adds.
There will be a second event on Wednesday Feb. 18 at SoNo Ice House. Four teams will compete: WHS Girls vs. Hamden and WHS Boys vs. Norwalk.
As a parent, Claire says it’s immensely comforting to know the school and student community has rallied support around her children. “The kids are posting about it on Facebook. We’ve already raised $2,800 on the website and the game hasn’t even started. We’ve gotten so many sweet notes. Families that we don’t even know reaching out to say, ‘We care about you,’ it’s overwhelming.”
She has also felt fortunate to be part of the Wilton community, a place the family moved to only four years ago.
“It’s a side of illness that is almost God’s gift of blessing. You see a side of people giving back that you wouldn’t have seen had you not been in the middle of it. That includes the players–they all call me ‘Momma.’ The other day I walked under the High School underpass, and there were four hockey players pounding the glass, big hockey players–you can’t get more manly young 18-year-old men–waving, calling, ‘Momma! Momma!’” she laughs. “You can’t manufacture that. You can only model that. It’s a tribute to so many of these hockey families. Especially in Wilton, where so many of our children are privileged, but even with that privilege, it’s not just about what you get, it’s what you give back.”
She says that’s one major thing that gives her and Eric strength.
To donate in advance of Saturday’s game, visit www.als.net/craven. The first $10,000 will be double-matched, and organizers are hoping to raise $40,000 for ALS research at TDI.