flok Family Camp and Adult Retreat: Where Community, Adventure, and Learning Take Flight

On June 2, 2024, flok wrapped its annual Family Camp West in Antelope, Oregon. Nearly 300 attendees gathered at the Washington Family Ranch for an unforgettable weekend of adventure, community connection, and of course – delicious low-protein food.  

“Our goal is to create a comfortable and relaxed experience. One way we do this is through food preparation, so campers and caregivers won’t have to make anything,” says Kristen Vanags, flok’s Director of Community Engagement. “Our flok staff and volunteers cook meals for a range of protein tolerances, and make sure everyone has plenty of delicious options and feels full!” As a long-time co-director of Georgia PKU Connect’s Family Camp, Kristen brings over a decade of camp coordination experience to flok. She loves flok’s expansive approach to uniting all inherited conditions of protein metabolism: HCU, MSUD, PKU, OAs, TYR, and UCDs. “The best part of camp is seeing the community come together: people sharing ideas and tips, comforting one another, or meeting someone else with their condition for the first time.”  

Set against a rustic desert backdrop, Family Camp West offers a diverse itinerary for all ages. From waterslides, crafts, Olympic events, to Science Night and a Talent Show – there’s no shortage of engaging activities. Even with a fun-filled schedule, leisure time is a highlight for many campers as it allows space to forge new friendships or renew connections from years past. And for many, camp is a springboard into self-discovery: a chance to build confidence, gain hope, and learn skills for navigating daily life with a metabolic condition.  

Tingting Liu, mother to seven-year-old April with tyrosinemia type 3, attended flok Family Camp with her daughter for the second time this summer. She shares that after April’s first camp experience, she felt more confident talking about her tyrosinemia diagnosis. She became more outspoken in class, writing essays on her condition and explaining to classmates why she drinks formula and eats a low-protein diet.  

Her mother attributes some of April’s confidence to the positive influence of the teenagers and young adults at Family Camp – “They model amazing things for the younger kids – like the importance of taking your formula, doing your blood checks, and following your diet.” By meeting older campers, caregivers like Tingting are also reassured that a full and rewarding life is possible with a metabolic condition.  

While Family Camp has many benefits for younger children and their families, the fun, learning, and comradery extend well into adulthood. James Fryer, 24, has attended all 21 Family Camps since PKU Northwest started the tradition (flok, as PKU News, took over the camp in 2021). As a lifelong camp-goer, James formed enduring friendships with others with PKU. Now a young adult, he seized the opportunity to spend more time with peers his age at flok’s inaugural Adult Retreat.  

During the two days leading up to Family Camp, retreat attendees cooked meals together, rode Go-karts, zip-lined, and talked by the campfire. James enjoyed the down time with people his age to share experiences and deepen connections. “It was that next step of talking about life as an adult with PKU – about work-life balance, insurance coverage, and people’s experiences with certain treatments. It gave me a lot of perspective.”  

Lynn Wang, a 23-year-old from Canada with PKU, also attended both the Adult Retreat and Family Camp. Her metabolic clinic encouraged her to sign up for the flok newsletter, and after receiving an email advertising camp, she decided to go solo. Lynn described the other retreat-goers and campers as welcoming and kind. “It was really great to find a group of people you can share experiences with that know exactly what you’re going through.”  

Prior to camp, Lynn shared that she struggled to keep her phenylalanine (phe) levels in check – especially during the years she attended university. She talked with other young adults about their experience managing a low-protein diet, and the side effects of elevated phe. They exchanged recipes, shared their go-to orders at restaurants, and talked about what drives them to stay on their PKU diet. “Chatting with other people who are motivated to have good management of their condition helped me create a more consistent diet and routine for myself when I got back from camp.”  

Whether it’s inspiration for condition management, fun memories, or new friendships– everyone leaves camp with an important takeaway. Community members that missed the event have an opportunity to attend flok’s first-ever Family Camp East in Tuftonboro, New Hampshire from September 19-22. Set on the shores of Lake Winnipesaukee at Camp Belknap, attendees will enjoy water sports, traditional camp activities, crafts, and more. Registration is open now through the end of the summer at https://flok.org/camp 

For any flok members considering a future camp, Lynn urges, “Just go for it. It truly is an amazing experience.”