Fundraisers generally benefit one charity, but the “Evening Under the Stars” event Saturday at Spikes raised funds for three.
Benefitting from the community’s support were the Bailey R. Moore Foundation, Kosciusko County Riley Kids Fund and Cure JM Foundation. With 230 people in attendance, the event included a buffet, a short presentation on each of the charities and a performance by Don Middlebrook and The Pearl Divers.
Saturday was the first attempt at such an event, according to co-organizer Alan Alderfer. In the past, an event at Spikes raised funds for the Riley Kids Fund, but co-organizer Randy Jones wanted to expand it to benefit the Moore and JM foundations, too.
Co-organizer Kristine Alderfer spoke about the Cure JM Foundation, which was established in 2003 by “parents of a young boy who was diagnosed with the incurable disease of Juvenile Dermatomyositis.” Since that time, the foundation has been run as an all-volunteer organization, and 98 percent of every dollar raised goes toward research.
The Cure JM Foundation funds two centers of excellence in North America, she said. “In the last year alone, we have awarded almost $800,000, which will fund research at five different research facilities.”
Juvenile Myositis, including Juvenile Dermatomyositis and Juvenile Polymyositis, is a group of rare and life-threatening autoimmune diseases in which the body’s immune system attacks its own cells and tissues.
Kristine said JDM is considered an orphan disease because it affects a small population. “You can also say that it is a disease that does not get the attention of many medical researchers,” she said. Only two out of a million children are diagnosed with Juvenile Dermatomyositis. The autoimmune disease has no cure.
In May 2006, she said she and Alan were blessed with twin girls, born nine weeks early but healthy. Then in early 2010, one of the girls, Katherine, started having issues. She started playing soccer but complained and cried about being tired and hurting. Then one day she couldn’t climb the stairs and started choking on her food. At 4 years old, Katherine was diagnosed with JDM.
Katherine eventually was admitted to Riley Hospital for Children for treatment.
Kristine said Katherine was “started on heavy steroid treatments both oral and via IV. She began chemo and multiple prescription medications. We were naive at first, but it did not take long to realize that our lives, her life, would never be the same.”
Katherine will always have the disease, though the Alderfers pray for her to go into remission and ask for donations to help find a cure.
Without the support of family, friends and the community, Kristine said she couldn’t imagine “fighting this battle.”
“We are so blessed to be a part of this amazing community, who has supported us along the way. We have been on the receiving end of gas cards, mowing of our lawn, meals, volunteers at our events and for, most importantly, friendship. We can’t imagine fighting this battle without your support,” she said.
Another mother, Julia Moore, spoke about how her late daughter’s foundation came to be.
She said Bailey loved to party and liked to have people over. When the “Evening Under the Stars” was being planned, Julia said she wanted it to be a celebration.
“It takes a village to raise a child, and that’s what we’re all here for,” Julia said, noting how “neat” it is that this community takes care of its children.
She said when Bailey was diagnosed with Acute Lymphoblastic Leukemia in 2010, it took them by surprise. They spent 8-1/2 months at Riley, and a few times at Lutheran Hospital. Despite it all, Bailey kept her smile. She told her mom that when she was better, she wanted to give back to the community that gave so much to her.
Bailey died March 3, 2011, but her dream of helping others continued on with the creation of her foundation. It provides scholarships to students so that they can realize their own dreams.
Her classmates helped begin the foundation by purchasing T-shirts for $10, but it has grown since.
“This would have been her graduating class,” Julia said. “We ended up with five scholarships this year. We hope to keep doing it because Bailey’s dream was to give back to the community. We want kids to realize their dreams in Bailey’s honor.”
A classmate of Bailey’s, Evan Hanson, spoke about how cancer has affected his family and his friendship with her.
He said 10 relatives on both sides of his family were diagnosed with cancer. Only five died, but three were in his lifetime. Two of those were his grandparents and just two or three years apart. He said losing his grandparents was very tough for him at that time being 6 years old.
One person who really had an impact on him was Bailey, he said. While they weren’t close, she was in his science class and he never got to really tell her how much she affected him.
“What I take from all of this is, in life you’ve got to be more,” he said, and not just go with what you’re comfortable with.
Alan concluded the presentations by speaking on the Riley Kids Fund. He said the crowd heard Kristine speak about Katherine’s story, but what she didn’t say is that for the first two years of that, they made weekly trips to Riley Hospital. “We’ve made over 200 trips there and driven over 30,000 miles. I own my own business and it was a lot of money. I can’t imagine these families who have to take time off work to go to Riley,” he said.
Four years ago, Alan and his business partner, Mike Bergen, started the Riley Fund. Bergen’s son Ben has had treatment at Riley.
Since its beginning, Alan said they’ve raised about $400,000, with half of that going to directly support the work of the hospital, which is a nonprofit. Other money from the fund provides financial assistance to Kosciusko County families who have a child being treated at Riley. Generally, assistance is in the form of gasoline and food gift cards, but also may pay for hotel stays.
The fund is at the Kosciusko County Community Foundation and generates about $8,000 a year. Alan said they’d like to get that to $10,000.
He said the representatives of the three organizations were at the “Evening Under the Stars” to not only let people know about these diseases and organizations, but also how they can help.
“I’m just so thankful you’re all here. When we started this, we didn’t know how many we’d get,” Alan said.
He thanked the event’s sponsors, including Spikes, Wyndham Garden Hotel, WRSW and Rabb Water and organizers Randy Jones, John Warren, Julia Moore and Kristine. He especially thanked Jones as Saturday’s event was his “big idea. He wanted to bring all three groups together,” Alan said.
Next year’s event will be Aug. 6, 2016.
Later, Alan said the turnout “definitely exceeded our expectations. Thank you to the community and everyone that came out. It is the most generous community that I know of.”
For more information, visit:
The Bailey R. Moore Foundation, letitgobmoore.com
Kosciusko County Riley Kids Fund, http://kcfoundation.org/riley/
Cure JM Foundation, curejm.org
(Story By The Times Union)
