Camp Knot a Phe ?
A Weekend of Fun and Learning for Metabolic Patients and Families
check out all the photos- LAST YEAR'S CAMP
Camp Knot a Phe
We are so grateful for our sponsors:
LINDSEY family, Biomarin, Nexus, Relief Theraputic, Nutricia, Ajinomoto Cambrooke, Zoia Pharma, PKU Perspectives, Banker’s Trust, Vita Flo, Horizon, Kleins pickles
Camp Knot a Phe, organized by the Arizona Network for Allied Disorders (ANPAD) in collaboration with the Phoenix Children's Hospital metabolic team, once again proved to be a remarkable event for metabolic patients and their families. Held in the summer this camp welcomes approximately 200 attendees to the beautiful 40-acre campsite just outside of Prescott, AZ, nestled amidst tall pines.
The main goal of Camp Knot a Phe is to provide a unique family camp experience for metabolic patients, (Allied Disorders and PKU ) who are currently on a protein-restricted diet with medical formula. In addition, PKU patients undergoing treatment with Palynziq were also warmly welcomed. This inclusive approach ensures that families facing similar challenges can come together, share their stories, and build lasting connections.
🎉 Here’s a past camp schedule :
Last year’s Camp Knot A Phe was a joyful, inspiring, and action-packed weekend that brought together campers, parents, siblings, caregivers, and healthcare professionals for a one-of-a-kind experience centered on support, connection, and fun for those living with PKU and allied metabolic disorders.
Friday – Welcome to Camp!
From the moment families arrived, it was clear a special weekend was ahead. Early Bird check-in began at 2:30 PM, with full check-in open until 5:30 PM. Campers picked up shirts, snapped welcome photos, received cabin assignments, and dropped off their formula at the Snack Shack.
The Vendor Fair in the Kiva was in full swing, with incredible support from sponsors like Biomarin, Nutricia, Vitaflo, Cambrooke, Cycle Vita, Zoia Pharma, Nexus, Relief Therapeutics, and PKU Perspectives. Families had the opportunity to explore new products, ask questions, and receive free samples. Meanwhile, younger campers enjoyed the petting zoo, making furry friends and getting into the camp spirit.
Dinner began at 5:45 PM, followed by introductions from the ANPAD Board and a warm welcome to new and returning families. The evening wrapped up with a crowd-favorite Dutch Auction, a cozy campfire and s’mores, and music under the stars. For those with questions about metabolic life and treatment options, the Pow Wow Q&A offered thoughtful discussion and shared experiences.
Saturday – A Day for Everyone
Saturday began with a nutrition check-in for patients under 16, followed by breakfast and the annual group photo, with everyone proudly sporting their camp shirts.
The rest of the day was packed with activities for all ages and interests, including:
☀️ Ziplining
🛶 Canoeing
🐎 Horseback Riding
🧗 Climbing Wall
🎯 Archery
🎨 Arts & Crafts
🏃 Field Games
👶 Poppets activities for kids 6 & under
Families also had the opportunity to participate in educational workshops. Last year’s sessions included topics like genetics, understanding Phe levels, recipe tips, and real-world strategies for managing metabolic disorders. Nurse Kara’s "Phe Level Tips & Tricks" was a standout session, along with Supraja Prakash’s engaging discussion on genetics.
In the afternoon optional talks, campers joined small-group sessions such as the Teen Talk (ages 10–18) and the Adult Roundtable, offering time for open conversations, shared experiences, and community building.
After dinner, everyone gathered for a colorful tie-dye activity and then danced the night away at the Family Line Dancing and Fun Night. The evening wrapped with free time, basketball, Gaga Ball, and relaxed hangouts under the stars.
Sunday – Treasure Hunt & Farewell
The final morning began with a last nutrition coaching session and breakfast, followed by a lively camp-wide treasure hunt. Campers then had one more chance to enjoy activities like canoeing, the giant swing, and finishing any crafts.
At noon, everyone gathered for the Closing Ceremony and Sack Lunch, reflecting on the weekend, celebrating new friendships, and sharing gratitude. Campers packed up and headed home by 2:00 PM, many already looking forward to the next year’s gathering.
Traditions, Food, and Fun
Camp Knot A Phe continued its beloved traditions — from the Dutch Auction and lip sync battle, to the vibrant chalk field wars. These moments of laughter and joy allowed campers of all ages to express themselves, bond with others, and create lasting memories.
Behind the scenes, Chef Kent and the ASU Culinary Team prepared low-protein meals that impressed everyone. Their collaboration with Phoenix Children’s Hospital’s genetics team ensured that every meal was both safe and delicious. ASU culinary students who participated in the program earned college credit for their work — a meaningful partnership that added to the spirit of community.
The Heart of Camp – Our Community
Camp Knot A Phe owes its success to the selfless efforts of so many. The Phoenix Children's Hospital genetics doctors, nurses, dietitians, and coordinators gave their time and energy to support every camper. The ANPAD Board, made entirely of volunteers, worked tirelessly to plan and host the event — and their dedication to serving the metabolic community made everything possible.
The atmosphere at camp was filled with love, understanding, and support. Families found comfort in knowing they were not alone, children made friends who truly understood them, and new memories were made around every corner. The connections built at camp didn’t end on Sunday — they continued throughout the year, offering guidance, friendship, and hope.
💚 Camp Knot A Phe is more than a camp — it’s a community.
It’s a reminder that no one has to face this journey alone. Together, we build strength, share wisdom, and celebrate every camper’s resilience.
We are truly grateful for everyone who made last year’s camp unforgettable, and we can’t wait to see what the future holds for Camp Knot A Phe and the families it serves.
We Care,
ANPAD