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.
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.
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 Denver native, a former Denver Broncos Cheerleader and presently the Founder and CEO of Hydrate IV Bar, a nutritional therapy and hydration spa with locations throughout Colorado, Arizona and Dallas.
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. He is very familiar with the hardships many of the families incur. Jon works in the medical device industry, formerly for Osiris Therapeutics, a company that develops wound care materials and currently with Smith+Nephew, a medical technology company. 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 Colorado.
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.
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.
Ellen joined the Butterfly Children Fund Board in 2022, after assuming the Director role for
Camp Spirit Colorado. She has a 16-year-old niece with Recessive Dystrophic EB whose bravery, courage and independence has increased each year as a result of her participation at Camp Spirit Colorado. Ellen, along with her extended family, has been actively supporting EB organizations for the past several years through various fundraising efforts. Having held senior roles in marketing and advertising for major brands in her professional career, Ellen will now bring her leadership, creativity and project management skills to the Camp Spirit team in order to carry on the legacy that retired Camp Director & Founder, Kaycie Artus, and her dedicated team have tirelessly built.
Catherine is a certified Pediatric Nurse Practitioner with Children's Hospital Colorado, as well as debra of America's EB Nurse Educator. Catherine is an active volunteer with Camp Spirit Colorado in the role of leading the camp's medical team.
Henry is a passionate EB advocate, public speaker, role model and mentor within the EB community. He is a 4th year student at the University of Denver studying History and Communications & Law. Once a former camper at Camp Spirit Colorado, Henry now acts in a camp leader role as the Social Director, using his unique experiences and talents to continue supporting other children living with EB.
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