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 150 campers of all ages From 24 US states and 2 countries Representing Classical HCU, Organic Acidemias, PKU, Tyrosinemia, & Urea Cycle Disorders |
Presented by |
Community Fair Vendors |
Over 150 community members gathered in Tuftonboro, New Hampshire for our second annual flok Family Camp East. Set at Camp Belknap on Lake Winnipesaukee, it offered all the classic camp traditions—rustic cabins, outdoor adventures, late-night sing-alongs—plus something extraordinary: a rare chance to unite our metabolic community.
Individuals and families traveled from across the country (and beyond!) to share a weekend that was equal parts laughter, learning, and belonging.
One Community, Many Conditions
This year’s campers represented five different inherited metabolic conditions— Classical Homocystinuria, PKU, Organic Acidemias, Tyrosinemia, and Urea Cycle Disorders. While each condition is distinct, they often share a common thread: medical formula, medications, and a low-protein diet to meet nutritional needs. At Family Camp, these challenges become points of connection, creating instant solidarity with others.
Food & Formula Without Barriers
Family Camp is one of the few places where mealtimes are stress-free for those with metabolic conditions. A formula station and refrigerators were set up around camp, making preparation, cleaning, and storage simple. What may seem small to others—having space to mix formula or a fridge nearby—means freedom for our community.
That freedom extended to meals too. flok dietitan Jenn Beazer, alongside volunteer cooks, prepared a weekend of delicious low-protein foods: from po’ boy sandwiches (a new Cook for Love recipe by Brenda Winiarski), to waffles, veggie burgers, tacos, and lemon pound cake. The best part? Meals are made to accommodate all protein tolerances so everyone can enjoy.
Parents described how liberating this was for campers. Cheryl, whose daughter Katelyn lives with Citrullinemia type 1 (a Urea Cycle Disorder), said:
“Camp lets them be kids without having to worry about what they can eat or if there will be food for them to snack on when playing.”
Shelly, attending with her seven-year-old son Shane (PKU), shared a similar joy:
“The freedom of not having to worry about food was incredible. I felt so much joy watching Shane try new things at the buffet like sweet potato bacon, without having to think whether he could eat it or not.”
First-Time Connections
Eric, 8 (PKU)For many families, Family Camp is their first chance to meet others living with rare metabolic conditions. Aariel’s family, for example, had never attended an event with other children with PKU until this year, when their son Eric turned eight. She described the moment Eric realized he wasn’t alone:
“Seeing Eric recognize all of these other kids have PKU and he’s not alone—that he’s part of this bigger community where he belongs—it brought peace to my heart.”
Other parents shared that same sense of relief. Shelly reflected on what the weekend meant for her son Shane:
“Family Camp helps people see they are not isolated or alone. For Shane, it let him see his place in the world—in this community where other people live the way he does.”
Katelyn, 12 (CIT-1) and camp dog Ruka“No child should grow up without meeting someone else with the same or similar condition.”
Freedom and Fun for All Ages
While metabolic conditions are an important backdrop of Family Camp, fun is the main story. Campers climbed rock walls, sailed, played beach volleyball and pickleball, made moccasins, and cheered each other on in the Camp Olympics. They also enjoyed a relaxed atmosphere that encouraged them to choose their own adventures.
For Cheryl, that freedom stood out most. She loved watching her daughter Katelyn’s independence blossom—whether jumping into a game of tag or attending a craft session solo. Moments like these captured the spirit of camp: freedom to play, connect, and try new things.
Beach volleyballThat spirit also shines through camp traditions. One tradition—the camp-wide Bingo challenge—encourages fun dares like high-fiving the flok’s Director of Community Engagement, Kristen Vanags, joining the silent disco, or dipping their toes in the lake. Aariels’ son Eric loved it so much he kept his Bingo card as a keepsake.
Both Shelly and Aariel noted that a camp highlight for their sons was simply “making friends.” Even siblings who don’t live with metabolic conditions made fast friendships with others and found endless activities to enjoy.
Whole-Family Impact
Family camp touches everyone who attends. Many families discover unexpected encouragement and relief in shared experiences. Shelly reflects:
“I was so focused on what Shane was going to get from the camp experience, that I completely underestimated what it would do for me. I didn’t realize how important it is to talk with other parents who share your situation—for support, ideas, and little pointers that are so helpful.” 
Shane, 7 (PKU)Shelly's daughter also found reassurance:
“She worries about Shane. Seeing older kids and adults with PKU living full lives—it put her mind at ease.”
For families, seeing the age spectrum—from toddlers to adults thriving with metabolic conditions—brings a sense of perspective and possibility.
A Tradition in the Making
For many first-timers, Family Camp quickly becomes a tradition. The chance to gather in a beautiful place with a community that understands their unique journey is truly unmatched.
When asked if she would return next year, Aariel didn’t hesitate:
“One hundred percent. Even before we left, Eric asked, ‘We’re coming back next year, right?’ And I told him, ‘Yes we’ll come back every year for the rest of your life.”
To experience the magic of Family Camp, subscribe to flok’s newsletter and follow our social channels for 2026 camp dates and registration details.
A heartfelt thank you to Camp Belknap and its outstanding team, whose leadership, traditions, and warm hospitality helped make this weekend such a success for our community.
