Shared Journeys...
For 15 years, families have come to Camp Knot-a-Phe not only for the unforgettable camp experience, but also for the knowledge, support, and encouragement they take home long after camp ends. Hosted by Arizona Network for PKU and Allied Disorders, Camp Knot-a-Phe has become a place where education and fun come together in a way that feels natural, welcoming, and empowering.
Every year, campers and caregivers tell us how much they appreciate having access to important educational talks while still being able to enjoy all the classic camp activities they love. Whether it’s zip lines, crafts, games, friendships, or evening campfires, families know they can also find trusted information, meaningful conversations, and support from others walking similar journeys.
This year - our 15th anniversary celebration - will be no exception.
One of the things that makes Camp Knot-a-Phe special is that all educational sessions are optional. We simply want these opportunities to be available for anyone who may benefit. Families can choose the talks that fit their interests, needs, and schedules while still enjoying everything camp has to offer.
Everyone who attends a talk will receive raffle tickets for prizes.
Here’s a preview of some of the incredible educational sessions available during camp this year:
Sephience Presentation with PTC
Saturday | 9:00–10:00 AM
Location : Cypress
PTC Therapeutics will present information about Sephience (sepiapterin), an FDA-approved prescription medicine for adults and children 1 month and older with PKU. Families will learn more about how this treatment works alongside a Phe-restricted diet and have an opportunity to ask questions and learn about new developments in this PKU treatment options.
This session is open to PKU patients, caregivers, and attendees of all ages.
Care Mapping for Caregivers
Saturday | 10:00–11:30 AM
Location : Chapel
Presented by Karen Casey, MS, RDN
Caregiving can often feel overwhelming, especially when balancing medical care, school, therapies, insurance, and everyday family life. This interactive workshop helps caregivers visually organize and map out support systems, resources, goals, and care plans in a meaningful and practical way.
Attendees will participate in hands-on activities and even receive raffle tickets for prizes. This session has been highly requested and is designed to help families leave camp with tools they can continue using at home.
PKU Treament Game & Genetics Trivia Hour
Saturday | 11:00 AM–12:00 PM
Presented by the Genetic Counseling Team- These sessions are designed to make learning fun — especially for younger campers.
Phe Balance: PKU Treatment Game (11:00–11:30 AM)
A hands-on simulation game where players manage PKU by balancing phe levels using different treatment options. Players experience how medical formula, Kuvan, and Palynziq work differently to control phe while ensuring adequate tyrosine (tyr). The goal: keep phe low and tyr adequate by the end of the game
Genetics Trivia Hour (11:30 AM–12:00 PM)
A fun, disorder-neutral trivia session where families and kids can test their genetics knowledge together while competing for prizes. Campers will participate in an engaging activity focused on learning about enzymes and metabolism through hands-on experiences and games.
Both sessions are open to all ages and are especially great for younger campers.
Care Mapping for Patients
Saturday | 1:00–2:30 PM
Presented by Karen Casey, MS, RDN
This patient-focused version of the care mapping workshop is designed for individuals ages 10 and older. Participants will explore ways to better understand their own healthcare journey, support systems, goals, and self-advocacy skills.
These sessions are often incredibly meaningful for older children and teens as they begin taking more ownership of their health and future planning.
Bonus Activity- Low Protein Escape Room
🧩 BioMarin will host a Low Protein Escape Room on the patio outside the Cypress Room from 1:30–2:30 PM.
Open to all ages and all disorders everyone is welcome to participate!
Palynziq Presentation with BioMarin
Saturday | 2:30–3:30 PM
Now approved for ages 12 and older, Palynziq continues to become an important treatment option for some individuals with PKU.
This session, presented by BioMarin, will feature one of the first teenagers to use Palynziq, giving families the chance to hear firsthand experiences and ask questions about treatment expectations, experiences, and considerations.
This presentation is intended for patients ages 12+ and caregivers.
Mental Health Session
Saturday | 3:30–4:30 PM
Presented by Anna and Yasir
Mental health is an important part of living with any chronic medical condition, and this session creates a supportive space for honest conversations around emotional wellness, stress, anxiety, burnout, and support systems.
Designed for ages 12+ along with caregivers, this interactive workshop will provide practical tools, open discussion opportunities, and thoughtful resources for families navigating the emotional side of metabolic disorders.
Attendees will learn and practice strategies to help support their mental health and overall well-being. Topics will include managing stress, anxiety, depression, emotional overwhelm, and the challenges that can come from both living with and caring for someone with a metabolic disorder.
This workshop aims to help individuals regain a sense of emotional balance, confidence, and autonomy while navigating the daily realities of chronic medical care. By recognizing that they still have choices, strengths, and opportunities to show up authentically, participants can begin reclaiming the sense of control that is often impacted by long-term health conditions.
Allied Disorders & Emerging Treatments
Sunday | 9-10am
Presented by Dr. Shagun Kaur
Camp Knot-a-Phe represents more than just PKU. Families attending camp live with a wide range of metabolic and allied disorders, and this session will help highlight the broader community represented at camp.
Dr. Shagun Kaur will discuss:
- The various disorders represented at camp
- Current research and emerging treatments
- Advances in metabolic disorder care
- What families should know about future treatment possibilities
This educational session is open to all attendees and is expected to provide valuable insight into the rapidly evolving world of metabolic medicine.
🎟️ All attendees will receive a raffle ticket for a chance to win a prize!
More Than Camp
What makes Camp Knot-a-Phe truly special is that learning never feels clinical or overwhelming. Families can spend the morning at an educational session, then head to camp activities, share meals with new friends, laugh around a campfire, and connect with others who truly understand the journey.
For 15 years, Camp Knot-a-Phe has been about building community, sharing hope, and helping individuals with PKU and allied disorders live fuller, more informed, and more connected lives.
We cannot wait to celebrate this milestone year with all of you. Thank you to the incredible volunteers, presenters, sponsors, medical professionals, and families who continue to make Camp Knot-a-Phe such a meaningful experience year after year.
See you at camp!