A Special Place for the Fabry Disease Community

A weekend camp in North Carolina is designed for patients and their families

Jerry Walter avatar

by Jerry Walter |

Share this article:

Share article via email
family camp | Fabry Disease News | main banner image for

One evening in mid-2008, my wife, Angela, and I were watching television at home and saw an advertisement about Victory Junction, a camp in Randleman, North Carolina. The camp has a race car theme in honor of the late NASCAR driver Adam Petty and serves children with serious medical conditions. At that moment, I decided the National Fabry Disease Foundation (NFDF) should organize a camp for families with Fabry disease.

This was just three years after I’d founded the NFDF, a national charitable nonprofit organization to support people living with Fabry disease and their families. Starting a camp for these families turned out to be a great idea. Our community members desperately needed some added joy in their lives to balance the many difficulties, challenges, and tragedies experienced by those living with the symptoms of this progressive, destructive, and often life-threatening disease.

Soon after that evening, I contacted the Victory Junction camp manager to find out if hosting a Fabry family weekend was possible and what the process would be to make it happen. A camp visit for a meeting and tour followed.

Recommended Reading
fabry disease symptoms | Fabry Disease News | illustration of mother walking with boy

European Teens Report High Fabry Burden, Not Fully Lessened by ERT

The camp looked amazing, with so many modern, colorful facilities and great activities. Its location was perfect, just an hour away from my home office, which made coordination much easier. I began to get excited about the prospect of creating something very special for the U.S. Fabry community.

From our meeting, a plan emerged to sponsor a Fabry family weekend camp in 2010. An enormous amount of fundraising and detailed planning ensued. The NFDF decided our weekend needed to be free for the families who participate. After all, if only the families who could afford to travel and attend could participate, many families who needed the experience the most would miss out.

We did it, and our camp experience was truly amazing. After the first year, we added a pre-camp education conference to help educate parents about Fabry disease. In 2020 and 2021, during the COVID-19 pandemic, we opted for just a virtual conference. Now the NFDF will host its 12th annual Fabry family education conference on Oct. 13–14 and its 11th annual Fabry family weekend camp on Oct. 14–16.

Victory Junction, the U.S. Fabry community’s special place

The theme park-quality facilities and fun-filled activities include:

  • Eating meals at the Fuel Stop (cafeteria)
  • Bowling at Victory Lanes bowling alley
  • Fishing at the Catch, Kiss, and Release Marina
  • Getting a new hairstyle at the Fab Shop
  • Eating snacks from the Pit Stop
  • Playing games or changing a tire at Adam’s Race Shop
  • Shooting archery
  • Riding horses at the Horsepower Garage or petting animals at the attached petting zoo
  • Paddling a canoe or kayak or pedaling a paddle boat
  • Playing a round of mini-golf
  • Playing water games (weather dependent)
  • Playing kickball or other games in the indoor Superdome
  • Playing basketball at the gymnasium
  • Riding the zip line (for teens)
  • Making something to take home at the Arts and Crafts shop

And of course, we try to avoid visiting the Body Shop (medical clinic).

family camp | Fabry Disease News | photo of Jerry behind a chair where Charlie sits, with each having green hair on top. People are milling about behind them

Jerry, behind the chair where another camper, Charlie, sits: twins with new hair from the Fab Shop. (Courtesy of Jerry Walter)

family camp | Fabry Disease News | outdoor photo of one man holding a fish while Jerry kisses it

Jerry kissing a fish at the Catch, Kiss, and Release Marina. (Courtesy of Jerry Walter)

Even after seeing the list of activities, it’s difficult to capture the essence of the camp with words.

I created a Fun at Victory Junction photo album on the NFDF’s Facebook page for you to see this spectacular place and the smiling faces yourself.

The application process for this year’s events is open now, but won’t be for much longer. If you know a family with Fabry disease who may benefit from our camp, ask them to contact me at [email protected] to let me know they are interested in participating.

To be eligible to attend the conference and camp:

  • Families must have at least one child with Fabry ages 6–16 for the entire family to attend
  • Children must have had all their required childhood vaccinations
  • All family members must be fully vaccinated against COVID-19

Eligibility to attend the conference only:

  • Must be an adult with Fabry, a family member, or caregiver
  • All family members must be fully vaccinated against COVID-19

We still need more volunteers 19 years and older to support the camp. Applications are being accepted.

The NFDF’s annual Fabry family education conference and especially the NFDF’s annual Fabry family camp are places where family members can meet others with Fabry disease, so they can avoid feeling alone with their rare disease. At these events they can bond, begin to develop lifelong relationships, and have some much-needed fun together.

We look forward to seeing some of you at our special place soon!


Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Fabry disease.

Comments

Diane Rothman avatar

Diane Rothman

There are no words for the value of this camp. For families with Fabry, many of whom have never met another family with this disease, it is life changing.

Reply
Jerry Walter avatar

Jerry Walter

Thank you, Diane! We agree with you wholeheartedly! Best regards, Jerry

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.