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

In 2007, 他的女儿, 亚历克斯, 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 亚历克斯 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.

澳门正规博彩十大排行平台只是漂浮在风中,没有任何真正的资源,”吉姆说. “澳门正规博彩十大排行平台真正的第一次教育, 和 the first time we experienced the uplifting feeling of being part of a community, 是在澳门正规博彩十大排行平台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 和 other rare metabolic conditions together – sometimes across great distances – to create a sense of community 和 share resources. 第21个年头, 民间家庭营继续扩大, 总之, organizations focused on PKU 和 other rare metabolic conditions now offer camps in eight states across the country.

“社区对澳门正规博彩十大排行平台所有人都很重要, but particularly for those facing the challenges of living with a rare condition,凯特·德莱尼说, 高级主管, 澳门正规博彩十大排行平台的病人事务. “We’re proud to support flok Family Camp 和 several others that have filled a void by bringing people in the PKU community together.”


吉姆(左)和亚历克斯·帕里斯, 还有他们的家人, have been regulars at folk Family Camp West since discovering it when 亚历克斯 was 8 years old.

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 和 care. Chefs provide campers with creative low-protein food options 和 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.组织, 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, 亚历克斯, 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 和 it was so inspiring to meet other kids 和 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 和 just having those connections is amazing.”

亚历克斯 Parris acting as a lifeguard while attendees of folk Family Camp West jump into a pool.

亚历克斯 (lower left) volunteers as a lifeguard at the camp’s pools 和 water slides.


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 Portl和 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, “澳门正规博彩十大排行平台真的不相信别人会照顾澳门正规博彩十大排行平台的儿子, 但你和他一样有北大, 所以澳门正规博彩十大排行平台相信你,’”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网站应用程序) to create a virtual camp attended by hundreds of people from as far away as New Zeal和. 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 和 Executive Director of flok 和 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. “澳门正规博彩十大排行平台说,‘澳门正规博彩十大排行平台为什么不做点什么呢?’”

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

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

Jen克里斯坦 with her husb和 布莱恩 和儿子 Emery 和 Owen at folk Family Camp West.

Jen克里斯坦, 与丈夫合照, 布莱恩, 和儿子, 埃默里(左)和欧文, first attended folk Family Camp West more than 20 years ago 和 now returns annually with her family.


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 和 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.”

在folk family Camp West, Korolyk一家在滑梯前

托比Korolyk (right) has been attending folk Family Camp West with his family since 2010.

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, underst和ing clinical trials 和 ensuring a smooth transition of care from adolescence to adulthood.

亚历克斯 is also attending again this year 和 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 h应用程序ens 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 和 managing PKU 和 other metabolic conditions offered throughout the United States, 其中一些获得了澳门正规博彩十大排行平台慈善捐赠计划的资助;