Nord hwgc rare disease summer family camp

Rare Disease Summer Family Camp: A Place to Call Home

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NORD is pleased to be working with The Hole in the Wall Gang Camp again this year to host the second-ever rare disease summer family camp, June 1-4 in Ashford, Connecticut. For the second year, they will be hosting a special Summer Family Camp for children and families impacted by rare diseases to join together for a weekend of pure fun – free of charge.  The Family Camp will be hosted for 25 families located in the Northeast Region of the U.S. To apply for the 2017 camp, click here. 

The story below was originally shared in The Hole in the Wall Gang Camp Fall 2016 Gazette and provides a look into what Camp has to offer for the rare disease community in 2017.

The Hole in the Wall Gang Camp has always been a safe haven for those facing serious illness, providing an escape from the loneliness and isolation that is so often encountered in their everyday lives. Camp has also been dedicated to building a community of support that embraces the entire family, and it continues to expand its efforts to reach those families that are the most isolated-those with children facing incredibly rare illnesses.

Rare-disease-summer-family-camp-hwgc-2016During the summer of 2016, for the first time ever, Hole in the Wall hosted a Family Camp specifically for families of children with rare diseases. These families often never meet anyone else coping with the same diagnosis. Some have children with illnesses so rare that they don’t even have a diagnosis. Working closely with the National Organization for Rare Disorders (NORD), Camp offered these families something they don’t frequently experience-the opportunity to meet others who are walking a very similar path and can truly understand the unique challenges they are facing.

“One of the biggest issues facing the families we serve is just fitting in,” said Lisa Phelps,  director of marketing and community relations for NORD. “We want to be a partner and resource to these families. Recognizing the value Hole in the Wall provides in helping them feel normal and part of something bigger and better, we couldn’t wait to be a part of Family Camp.”

During four days in early June, 24 families gathered at Camp to experience all that Hole in the Wall offers. What they found was a place where acceptance was the norm, and they had the opportunity to let go and have fun while all their medical needs were expertly tended to. Some of them even met families with a shared diagnosis for the very first time.

“At Camp, you can let your guard down because everyone there has their own challenges,” said Irfan Patel, who attended with his wife and children. “It really puts your life in perspective-you realize you are not alone, and you can just be yourself. It’s a huge burden off of your shoulders.”

Similar to Camp’s Family Weekends, each family in attendance is supported by their own Family Pals-counselors who help facilitate the fun and ensure parents are afforded the time to interact with other parents.Rare-disease-summer-family-camp-hwgc-2016-2

“One of the most amazing things about Family Camp was the parent chat,” said Camp’s Medical Director Sharon Space. “As the parents shared their stories, they were amazed to learn how much they had in common. They were able to share resources as well as support. It was really inspiring to see.”

The children, too, gain so much from the experience.

“I have four children: Yusuf, Miriam, Khadija and Ibrahim,’ said Irfan. “My oldest, Yusuf, who faces medical challenges, got a big boost of confidence at the climbing wall, while my third child, Khadija, who also faces medical challenges and is ordinarily very shy, found the one place where she opened up to activities.”

As Camp continues to expand its offerings, these families will continue to be a growing focus.

“There are 30 million people looking for support,” said Lisa. “Hole in the Wall can provide a really unique and transformative experience for those families who get to take advantage of it,”