Butterfly children fund

This EB Fund was established to raise funds for the following areas

 

  1. Family financial needs - Because EB is such an expensive disease, families can find themselves overwhelmed by the costs and time involved in caring for their children with EB, as well as other routine family requirements.  Hospitalizations are expensive, and often it is impossible for both parents to work due to the time involved in care.  There are also medical needs not covered by insurance, which are covered by the fund.
  2. Camp Spirit Colorado - This is the EB Winter Adventure Camp for children with Recessive Dystrophic EB from around the nation.  it gives the campers an opportunity to safely experience some of the winter activities their friends enjoy such as; skiing, snowmobiling, dog-sled rides, and sleigh rides.  It also gives them the opportunity to be around other children  like them. Because EB is so rare, often the children are the only ones in their school and town with the disease.
  3. Research - This is the only hope for children with EB.  As yet there is no cure, but there are promising clinical trials beginning that can, hopefully, lesson the impact of EB.  Recently, a consortium was formed by Stanford, Columbia and Colorado Universities, pledging to work together to advance clinical trials. There are several other types of trials going on internationally. At this point there is no cure, but the hope is one will be available one day. 

Special Camp For Kids Living With ‘The Worst Disease You’ve Never Heard Of’

Board Officers

Kaycie Artus, President

 

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 Warta, Secretary

  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.  

Victor Nehf, Treasure

  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.  

Board Members

Jonathan Leines

 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 Warta

 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 Beall

 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 Wafer

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.