吉姆·帕里斯回想起在爱达荷州偏远地区抚养一个患有苯丙酮尿症(PKU)的孩子的头几年, 最突出的是缺乏资源来帮助应对罕见代谢疾病的挑战.

In 2007, his daughter, Alex, 他是爱达荷州唯一一个出生就患有PKU的婴儿。PKU是一种罕见的遗传疾病，其特征是酶缺乏，这种酶会抑制人体分解一种叫做苯丙氨酸(Phe)的氨基酸的能力，这种氨基酸存在于所有含有蛋白质的食物中. 吉姆回忆说，他们遇到的唯一一位营养学家对PKU了解不够，无法提供可靠的指导，告诉亚历克斯必须限制饮食，以限制与该疾病相关的认知问题.

A turning point was when the family discovered a PKU family camp in Antelope, Oregon when Alex was 8 years old.

“We had just been floating in the wind, without any real resources,” Jim says. “Our real first education, 这是澳门正规博彩十大排行平台第一次体验到成为社区一份子的兴奋感, was when we finally got to camp.”

The camp, flok Family Camp West, 现在是美国几家专注于将患有PKU和其他罕见代谢疾病的人聚集在一起——有时跨越很远的距离——以创造一种社区意识和共享资源的机构之一. In its 21st year, flok Family Camp continues to expand, and in all, 专注于PKU和其他罕见代谢疾病的组织现在在全国八个州开设了营地.

“Community is so important for all of us, 尤其是对那些患有罕见疾病的人来说,” says Kate Delaney, Senior Director, Patient Affairs at 澳门正规博彩十大排行平台. “澳门正规博彩十大排行平台很自豪能够支持民间家庭营和其他一些通过将北大社区的人们聚集在一起来填补空白的活动.”

Attendees at flok Family Camp enjoy a number of traditional camp activities, such as water slides, arts and crafts, and a talent show, 以及教育会议，与会者了解代谢科学和护理的最新进展. 厨师为露营者提供创造性的低蛋白食物选择，家庭分享最喜欢的食谱带回家. Some of the dishes can be found on low-protein recipe websites like CookForLove.org, such as Boston Faked Beans, Sweet Potato Bacon and hot-dog-inspired Carrot Dogs.

Delicious low-protein recipes notwithstanding, Alex, now 16, 她说，发现这个夏令营最有意义的好处是，她不再感到独自面对北大.

“在我第一次去北大露营之前，我从未见过北大的其他人，见到其他在北大过着正常生活的孩子和成年人真是太鼓舞人心了,” says Alex. “I met a girl my age that first time and she is probably my best friend. 澳门正规博彩十大排行平台和其他一些露营的朋友一起聊天，有这些联系真是太棒了.”

Expanding on a Legacy of Bringing the PKU Community Together

The origins of flok Family Camp date back to 2003, when it was originally coordinated by PKU Northwest, a nonprofit focused on supporting the PKU community in Washington, Oregon and Idaho.

珍·克里斯滕森(Jen christensen)回忆起夏令营第二年从波特兰驱车三个小时来到这里的情景. Twenty-eight years old and single at the time, she enjoyed meeting the families, one of which also lived in Portland.

“I ended up babysitting their kids because they were like, ‘We don’t really trust other people with our son, but you have PKU just like he does, so we trust you,’” recalls Jen, who now attends family camp annually with her husband and two sons.

The flok team took the camp over during the COVID pandemic, leveraging its online expertise (the organization provides a Phe-tracking website and app)创建了一个虚拟营地，有数百人参加，最远的来自新西兰. 两个团体一致同意，2022年恢复到面对面的形式时，由民间接管家庭营地的运营, in addition to continuing the virtual camp.

The team at flok is working to further expand the impact of its camp program. This year the organization is offering its first East Coast camp in September. 另一个新增项目是俄勒冈州的成人静修活动，在家庭露营前几天举行.

Sarah Chamberlin, 她是大众的创始人和执行董事，也是北大10岁女儿的母亲, 说这个成人静修是在2023年家庭夏令营的一次深夜谈话后自发产生的.

“一群成年人在谈论他们成长过程中面临的代谢问题，而实际上并没有多少希望, and challenges they’re experiencing now as they age,” Sarah recalls. “We said ‘Why don’t we do something about this?’”

珍是深夜谈话的成年人之一，她也将参加静修会.

“与其他成年人交流，在一个澳门正规博彩十大排行平台可以彼此完全脆弱的空间里，这将是非常好的,” she says.

Reconnecting at Camp

Toby Korolyk, 17, began attending in 2010, and his family will be among the more than 280 people expected this year. 他说他很期待那里的食物、水上滑梯以及与朋友们的重聚.

托比说:“身边有人能让我产生共鸣，这种感觉真的很好。. “有一段时间，我几乎每隔一周就会梦到去露营，因为我太喜欢这个地方了.”

In addition to the usual activities, 今年的教育课程将包括如何在患有代谢疾病的情况下进行体育运动等主题, 了解临床试验，确保从青春期到成年期的护理顺利过渡.

亚历克斯今年也再次参加了这次活动，她说她很期待看到群里的一些朋友，他们帮助她度过了最艰难的日子.

亚历克斯说:“无论将来北大发生什么，我都会永远参加这个夏令营。. “I just can’t say enough about how much I love it and what it has meant to me.”

了解更多关于美国各地为患有和管理PKU和其他代谢疾病的人提供的营地, some of which have received grants from 澳门正规博彩十大排行平台’s charitable donation program:

• flok Family Camp West (Oregon)
• flok Family Camp East (New Hampshire)
• Camp Knot a Phe (Arizona)
• Emory Metabolic Camp (Georgia)
• Georgia Camp Connect (Georgia)
• Illinois Low-Protein Family Camp (Illinois)
• Camp Phever (Texas)
• IPAD Family Day (Utah)
• Camp Huber (Virginia)