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 daughter with Dominant Dystrophic EB who have dedicated +20 years to the EB community through fundraising efforts and as event coordinators for the EB Family Assistance Fund, The Butterfly Children Fund, The Courage Classic and Camp Spirit Colorado. In 2003, along with the EB Clinic doctors at Children’s Hospital Colorado and Foundation Staff, they formed the EB Family Assistance Fund to help offset financial hardships incurred by these families. The initial fundraiser was “Slopes for Hope”, a day-long family adventure on the Ski Train and the slopes of Winter Park. Kaycie Artus, then a physical therapist in the EB Clinic, left that day determined to give other children with EB the opportunity to ski – and right there the idea for Camp Spirit Colorado was born. In 2016, Susie and Matt teamed up with Kaycie Artus on The Butterfly Children Fund to expand and further efforts to support EB Families. Currently, Susie is as Realtor with AK Riley Real Estate/Coldwell Banker and Matt is the Managing Director at Bow River Capital, Software Growth Equity team.
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.
Kaycie is a retired Physical Therapist who has worked with children with Epidermolysis Bullosa since 1980. She has always had a special place in her heart for children with EB because she has seen the spirit behind the pain. Since she taught adaptive skiing with the National Sports Center for the Disabled in Winter Park, Colorado, she 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 and led the effort in the Director role for 15 years, bringing children to Colorado to enjoy time with each other, as well as all the activities the camp has to offer. In 2016, she created The Butterfly Children Fund, joining forces with Matt and Susie Warta, to advance fundraising efforts and to provide further support to families impacted by EB.
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 Doernbrack joined The Butterfly Children Fund Board in 2021, bringing +20 years of dedication, experience and knowledge of the challenges faced by EB patients and their families. Catherine is a passionate and widely recognized pediatric nurse practitioner who works in the Special Care Clinic and the EB Multi-disciplinary Clinic at Children's Hospital Colorado. In addition, she serves as the EB Nurse Educator for Debra of America. Catherine's commitment to the EB community extends beyond her professional duties, as she also serves as the medical director for Camp Spirit Colorado, a winter adventure camp dedicated to children with REB
Henry joined The Butterfly Children Fund Board in 2022. He is a passionate EB advocate, public speaker, role model and mentor within the EB community. As a recent graduate of the University of Denver with a History and Communications & Law major, he now works as an Employment Specialist for Easter Seals. Once a former camper at Camp Spirit Colorado, Henry also serves in a camp leadership role as the Social Director, using his unique experiences and talents to continue supporting other children living with EB.
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