When Jim Parris thinks back to the first several years of raising a child with phenylketonuria (PKU) in a remote part of Idaho, what stands out most is the lack of resources to help navigate the challenges of a rare metabolic condition.

In 2007, 他的女儿, Alex, was the only baby in all of Idaho born with PKU – a rare genetic condition characterized by an enzyme deficiency that inhibits the body’s ability to break down an amino acid called phenylalanine (Phe) found in all foods with protein. Jim recalls the lone nutritionist they encountered did not know enough about PKU to provide reliable guidance on the restricted diet Alex must consume to limit the cognitive issues associated with the condition.

一个转折点是他们在羚羊发现了北大的家庭营地, 亚历克斯8岁时在俄勒冈.

“博彩平台网址大全只是漂浮在风中，没有任何真正的资源，”吉姆说. “博彩平台网址大全真正的第一次教育, and the first time we experienced the uplifting feeling of being part of a community, 是在博彩平台网址大全终于到达营地的时候吗.”

营地, folk Family Camp West, is now one of several across the United States focused on bringing people with PKU and other rare metabolic conditions together – sometimes across great distances – to create a sense of community and share resources. 第21个年头, 民间家庭营继续扩大, 总之, organizations focused on PKU and other rare metabolic conditions now offer camps in eight states across the country.

“社区对博彩平台网址大全所有人都很重要, but particularly for those facing the challenges of living with a rare condition,凯特·德莱尼说, 高级主管, 博彩平台网址大全的病人事务. “We’re proud to support flok Family Camp and several others that have filled a void by bringing people in the PKU community together.”

参加folk家庭夏令营的人可以享受一些传统的夏令营活动, 比如水滑梯, 工艺品, 还有才艺表演, as well as educational sessions where attendees learn about the latest updates in metabolic science and care. Chefs provide campers with creative low-protein food options and families share favorite recipes to bring home. 有些菜肴可以在低蛋白食谱网站上找到，比如 CookForLove.org, 比如波士顿假豆、甘薯培根和受热狗启发的胡萝卜狗.

尽管是美味的低蛋白食谱, Alex, 现在16岁, says the most meaningful benefit of discovering the camp was no longer feeling like she was alone in facing PKU.

“I never met anyone else with PKU until I went to camp that first time and it was so inspiring to meet other kids and grown-ups leading normal lives with PKU,亚历克斯说. “我第一次遇到一个和我同龄的女孩，她可能是我最好的朋友. We have a group chat with some other friends from camp and just having those connections is amazing.”

延续凝聚北京大学社区的传统

民间家庭营的起源可以追溯到2003年, 最初由北大西北大学负责协调, 这是一个致力于支持华盛顿北大社区的非营利组织, 俄勒冈州和爱达荷州.

Jen克里斯坦 recalls making the three-hour drive from Portland in the camp’s second year. 当时二十八岁，单身, 她喜欢和这些家庭见面, 其中一个也住在波特兰.

“我最后照顾了他们的孩子，因为他们就像, “博彩平台网址大全真的不相信别人会照顾博彩平台网址大全的儿子, 但你和他一样有北大, 所以博彩平台网址大全相信你,’”珍回忆道。, 她现在每年都和丈夫和两个儿子参加家庭夏令营.

在COVID大流行期间，民间团队接管了营地, 利用其在线专业知识(该组织提供了一个 Phe-tracking网站 and app) to create a virtual camp attended by hundreds of people from as far away as New Zealand. The two organizations agreed that flok should take over operations of the family camp when it returned to the in-person format in 2022, 除了继续虚拟营地.

弗洛克的团队正在努力进一步扩大其营地项目的影响. 今年9月，该组织将在东海岸举办首个夏令营. Another addition is an adult retreat in Oregon, held in the days leading up to family camp.

莎拉Chamberlin, Founder and Executive Director of flok and the mother of a 10-year-old daughter with PKU, says the adult retreat came about organically following a spontaneous late-night conversation at the 2023 family camp.

“A bunch of the adults were talking about the struggles they faced growing up with a metabolic condition when there really wasn’t as much hope, 以及他们随着年龄增长所面临的挑战,莎拉回忆道. “博彩平台网址大全说，‘博彩平台网址大全为什么不做点什么呢?’”

Jen was among the adults in that late-night conversation and will be at the retreat.

“Connecting with the other adults and being in a space where we can be totally vulnerable with each other is just going to be so good,她说。.

在营地重新连接

托比Korolyk, 17, 2010年开始参加, 他的家人也将在今年的280多人之中. He says he’s looking forward to the food, water slides and reconnecting with friends.

“It has always felt really good to have people around me I could relate to,” Toby says. “For a while I was having dreams about being at camp pretty much every other week because I just love the place so much.”

除了平常的活动, educational sessions this year will include topics such as how to manage playing sports while living with a metabolic condition, understanding clinical trials and ensuring a smooth transition of care from adolescence to adulthood.

Alex is also attending again this year and says she looks forward to seeing some of the friends from her group chat who help get her through her most daunting days.

“No matter what happens with my PKU in the future, I’ll forever be going to this camp,亚历克斯说. “我无法表达我有多爱它，以及它对我的意义.”

Learn more about camps for people living with and managing PKU and other metabolic conditions offered throughout the United States, 其中一些获得了博彩平台网址大全慈善捐赠计划的资助;

• folk Family Camp West (俄勒冈州)
• folk Family Camp East (新罕布什尔州)
• 营地结 (亚利桑那州)
• 埃默里代谢营 (格鲁吉亚)
• 佐治亚夏令营连接 (格鲁吉亚)
• 伊利诺伊州低蛋白家庭营地 (伊利诺斯州)
• 营phev (德州)
• IPAD家庭日 (犹他州)
• Huber营 (弗吉尼亚州)