In the Colorado Mountains, there is a camp where for one week, kids with a rare disease can get away.
It’s called Camp Spirit and it’s for people suffering with Epidermolysis Bullosa, or EB, a rare skin disease.
Kaycie is a retired Physical Therapist who has worked with children with Epidermolysis Bullosa since the 1980's. She has always had a special place in her heart for children with EB because she has seen the spirit behind the pain. She taught adaptive skiing with the National Sports Center for the Disabled in Winter Park, Colorado for many years and realized that it would be possible for children with EB to ski safely using bi-skis with fixed outriggers. In 2008 she started Camp Spirit Colorado, bringing children to Colorado to enjoy time with each other, as well as all the activities the camp has to offer. Kaycie has also been instrumental in fundraising for the funds mentioned above, and decided in 2016, that it was time to start the Butterfly Children Fund to advance fundraising efforts.
Susie and her husband Matt are parents of a child with EB. After attending the EB Clinic at Children's Hospital Colorado, they could see that many of the families were struggling with the expenses involved with having a child with EB. They started the EB Family Assistance Fund to diminish the financial hardships incurred by these families. Their fundraiser, called "Slopes for Hope" involved the ski train and took place in Winter Park. At one of these events Kaycie brought a child with EB, Abbe, on the train, and arranged for her to ski in one of the bi-skies. Abbe had so much fun that this was the impetus to start Camp Spirit and give other children with EB the opportunity to ski. Susie and Matt have continued as fund raisers over the years.
Vic and his wife Cerise, have been stalwart supporters of both Camp Spirit and all fundraising efforts. They are the camp cooks and are always willing to jump in to help with any endeavor. Vic has much experience with accounting in his several businesses and is a valuable addition to the board.
Jon was a rep for one of the companies that assisted families with navigating the insurance maze to get the supplies they need for their children with EB. So, he is very familiar with the hardships many of the families incur. He recently switched jobs and is working with Osiris, a company that develops wound care materials. Jon's enthusiasm and energy has been directed at fundraising efforts for the Butterfly Children Fund, and he was instrumental in including Golf Tournaments in the fundraising efforts. He is also a volunteer at Camp Spirit.
Matt was instrumental with his wife Susie, in starting the EB Family Assistance Fund. Together they organized the fundraiser "Slopes for Hope". He remains an integral member of the fundraising team. The Winter Park Ski Train was eliminated a few years ago, but Matt has continued to work to raise funds whether riding in the Courage Classic, a bike ride that supports the EB Family Assistance Fund, or helping with our other fundraisers. He is the CEO of Gut Check, a company helping other companies find success.
Liz has a child with Recessive Dystrophic EB, and understands the overwhelming responsibility, expense and care involved when one is a parent of a child with this severe disease. She has started a school in Texas, for children who learn differently or have disabilities and may need some extra attention. Along with her parents and brother, she started the Beall Family EB Endowment Fund at Children's Hospital Colorado, to insure there would always be funds for the families and Camp Spirit. The Endowment has grown, but is still in need of more funds to reach its goal.
Katie is an enthusiastic supporter of children with EB and joined the board of the Butterfly Children Fund in 2018. She was first introduced to EB, and the need for fundraising efforts, by a friend with an EB Non-Profit in Australia. Katie is a woman of many talents. She was a Denver Bronco Cheerleader and a former sales representative for a medical company. She is presently a co-founder of Hydrate IV Bar, a nutritional therapy and hydration Clinic with 2 sites in Denver.
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