A Weekend at Fabry Family Camp: Hole in the Wall Delivers Good Times for All Ages

Kathleen Coolidge | April 26, 2012

Meet Jerry Walter, Founder and President of the National Fabry Disease Foundation. Jerry is also a retired U.S. Army Colonel. He has been an active and committed leader of one of the 2 US Fabry patient organizations, dedicating his energy, skills and time to help raise awareness of Fabry disease and build community. He manages a very active website www.fabrydisease.org.

Jerry wrote the article below about one of his exciting and successful projects, Fabry Family Camp.

In September 2011, we held our 2nd annual Fabry Family Weekend Camp at a wonderful place in North Carolina called the Charles Kleinschmidt Victory Junction Camp. It is one of a dozen Hole in the Wall Association camps in the U.S. and around the world originally started by the late actor Paul Newman. The Hole in the Wall camps specialize in camps for children with chronic illnesses. http://www.victoryjunction.org/.

Our weekend camp was born with a family’s desire to honor a family member who passed away from Fabry disease, Charles Kleinschmidt, and our desire to provide something very special to the Fabry community. This partnership and initial grant from the family grew into obtaining enough support from several other major sponsors and individuals to make the camp a reality. For the last two years we have gathered together nearly 40 families with Fabry disease from all over the United States to enjoy this very special event.

Our camp, which may be more appropriately called a theme park, is an amazing weekend of fun and family camaraderie that starts late Friday afternoon and ends on Sunday about noon. Victory Junction built by the NASCAR Petty family has a race car theme with facilities such as the Fuel Stop (cafeteria), Pit Stop (snack shop), Body Shop (medical clinic), Victory Lanes (bowling alley) and much more. We pack so much in to a short weekend that goes by so quickly, but it is great fun for everyone.

The camp experience gives families an opportunity to learn from each other, share their experiences with Fabry disease, have fun together, and to develop mutual support relationships to help bear the burden of living with our disease. The camp is virtually expense free for the families including airfare or driving expenses, lodging, activities, meals and snacks. For our second camp, some families helped with the costs of parking at their home airports and baggage fees but everything else was provided. The only things you can purchase at Victory Junction are a few souvenirs.

The cost of our camp may be more than other types of camps, especially the more rustic, outdoor adventure camps, but its facilities are unique and well suited to families with Fabry disease. Victory Junction requires a $50,000 donation for a weekend camp devoted to a single group. In addition, airfare and other travel costs totaled over $60,000 in 2011. We are also required to organize 20-30 volunteers from the Fabry community, including a couple of physicians familiar with Fabry disease, to supplement the staff and many local volunteers that frequent Victory Junction. Finally, add in the time and effort required to plan, organize, and implement the camp including purchasing the 150 or so plane tickets and it is a huge endeavor, but one that is well worth the benefit to our children, their families and our community.

Sponsoring the camp has brought our community closer together for not only for the families who attended but also the Fabry community as a whole. It has helped to create a community that is working better together toward our goals of improving the management and care of people with Fabry disease, increasing understanding and recognition of our disease, and increasing support and assistance programs for people with Fabry disease.

To learn more about our camp please visit the Victory Junction tab at the bottom of our home page at www.fabrydisease.org . To see more photos of our camp please visit our face book page at www.facebook.com/FabryDisease and take a look at the 2010 and 2011 Charles Kleinschmidt Fabry Family Weekend Camp photo albums. For more information, please contact me at jerry.walter@fabrydisease.org or 1-800-651-9131.

Genzyme volunteer

Sue Foley, Genzyme’s Associate Director, e-marketing volunteered at the Fabry camp for the first time this year.

“I wanted to volunteer to be with Fabry patients and families because I work in a function at Genzyme (e-marketing) where I know I’m helping patients, but I never get to work with them directly. Volunteering at camp was my opportunity to do that. I’m grateful that I work for a company that supports employees volunteering for these activities. It was great seeing kids having fun and just being kids….it brought back the days of summer camp.”

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