FAST FACTS: |
| Where Camp Belknap in Tuftonboro, New Hampshire |
| Why To connect, have fun, and unite in a shared vision for better metabolic care |
| Who 139 campers |
Thanks to Family Camp Sponsor |
And these additional Vendors & Supporters |
Family Camp East: A New flok Tradition at Camp Belknap
This year offered more chances than ever for the flok community to come together in person, with close to 500 community members at two camps. Twenty-three years after PKU Northwest first hosted the camp in Oregon that has become flok Family Camp West, flok launched our first-ever East Coast camp! Nearly 140 campers gathered in Tuftonboro, New Hampshire for a weekend of connection, learning, and lakeside fun. Learn more about what made Family Camp East unforgettable and feel inspired to join us next year.
New Setting, Same Community Focus
Nestled on the shores of Lake Winnipesaukee, Camp Belknap offers 300 acres of lush forest, athletic fields, and classic New England cabins. Campers enjoyed lakeside activities like waterskiing, sailing, and kayaking, and explored ropes courses, crafts, and games inland. At nighttime, they heard about the latest in metabolic research at Science Night and watched the animated series “The Low-Phe Life.” Most importantly? They relaxed, bonded, and supported one another.
“Our goal was to create a relaxed, low-pressure environment where people could connect,” shares Kristen Vanags, Director of Community Engagement. Campers held meaningful conversations over shared meals and around the campfire. The whole weekend exemplified flok’s mission to foster a strong sense of community.
Sense of Belonging
Kevin, Molly, and their 11-year-old son Riley attended flok Family Camp for the first time. “For so long Riley has felt like he’s the only one that has PKU,” Kevin says. “Seeing other kids his age drinking formula really normalized it for him.”
He and his wife Molly also experienced a sense of belonging – “Meeting parents and children with PKU made us feel like we belong to a community, rather than being out on an island.” He found it reassuring to exchange insights with other parents about their kids’ 504 plans or navigating school lunches with a restricted diet. “As parents of a child with a PKU, many of us ask ourselves, ‘Am I doing this right?’” Sharing these experiences and challenges offered both comfort and validation.
Danaé Bartke, who has Classical Homocystinuria and is the Executive Director of HCU Network America, also attended her first flok Family Camp. She touts its inclusive nature, “It was great to engage with people with other conditions of protein metabolism – like tyrosinemia and methylmalonic acidemia – to hear about their journeys and the obstacles they’ve faced. I found we all had more in common than not.”
Freedom to Have Fun
Marilyn Fuller, grandmother to eight-year-old Kellen, shares, “Kellen attended camp as Kellen, not as a kid with a metabolic disorder.” He made fast friends and for once, did not have to explain his low-protein diet or medical formula. She noticed how happy it made Kellen to have an entire buffet table of unrestricted food options. The worry-free food culture at Family Camp is valuable for both parents and kids alike, who often feel limited by the diet.
Danaé shared the sentiment, noting that a weekend without low-protein meal planning allowed her to relax and fully immerse herself in camp activities – “When you’re not thinking about the diet for a whole weekend, you can just be a human and enjoy connection and fun experiences with other humans.”
Gratitude for Growth
Many flok members appreciate the opportunity to venture beyond familiar territory at Family Camp – whether it’s tasting new food, learning a new skill, or striking up conversations with other campers. Danaé says, – “Not knowing what to expect, or who you’ll meet, that’s part of what makes camp so special.”
Kevin encourages others to step outside their comfort zones, highlighting the positives of trying something new. Kevin says, “We’re so happy we went. That first night when Riley went to bed with a big smile on his face – we knew it was worth it.”
Although this season of camp has come to an end, we look forward to more adventures with our flok community next year. To experience the magic of Family Camp, stay tuned to flok’s newsletter and social media for updates on 2025 camp dates and registration details.
A special thank you: To Camp Belknap and its remarkable team, who were key partners in the planning and execution of Family Camp East. Their spirited leadership of group activities, shared camp traditions, and expert preparation of food – for standard, vegetarian, vegan, and gluten-free diets – helped make the weekend a tremendous success.
