How ANPAD and Camp Knot a Phe Began

From One Dinner to a Life-Changing Tradition

Volunteers at Camp Knot a Phe 2025


Every great movement starts with a simple idea—and in our case, it began around a dinner table.

Years ago, Dr. Alec and Mrs. Alec opened their home to a small group of parents who shared something unique in common: they were raising children with PKU and allied metabolic disorders. That evening, over dinner, they posed a question that would shape the future of our community: “What if we created a summer camp where these families could come together, learn, connect, and have fun?”

Also invited to the dinner were members of the genetic metabolic team, who offered valuable insight into what such a camp could look like and how it could support patients medically, emotionally, and socially.

From that one dinner grew a strong and passionate parent advisory group, eventually forming ANPAD (Arizona Network for PKU & Allied Disorders)—officially becoming a nonprofit in 2011. That very year, the dream became a reality: the first Camp Knot a Phe took place.

Since then, Camp Knot a Phe has welcomed families every summer (with the exception of one year during COVID) to the cool mountain air of Prescott, Arizona. What started as a small gathering has grown into a cherished weekend event, often hosting up to 180 participants.

It’s more than just a camp—it’s a safe space, a support network, and a tradition that continues to evolve thanks to the heart and vision of those early families. And it all started with one dinner.

ANPAD: More Than Just Camp

ANPAD was co-founded by:

Kristi Smith, an adult with PKU, and her husband Matt Smith

Ann Hall, Margaret Delaney, and Mark Stanley, all parents of children with PKU

Sarah Cox, MS, CGC, a certified genetic counselor

Together, they built ANPAD into a thriving nonprofit that now hosts fundraisers, family events, summer camp, and support groups throughout Arizona.

We are your connection for PKU and Allied Disorders in Arizona—and we welcome families, friends, co-workers, medical professionals, and individuals with PKU or allied conditions to join us in our mission to inform, support, and unite.

👥 ANPAD Board of Director

  • Ann Hall – Co-President
  • Jami Puerta – Co-President (Phoenix)
  • Jodi Spidell – Program Director
  • Danielle Germany, RN – Vice President (Tucson)
  • Melissa Mermis – Community/Volunteer Liaison
  • Scott Jarrett, CIA – Treasurer
  • Mary Salem, PharmD – Secretary
  • Dr. Kirk Alec, MD – Genetic Representative
  • Peggy Kulch, MS, CGC – Allied Disorders Representative
  • Brittany Fanelli & Mayra Epps – Community Outreach
Camp Knot a Phe Board and Planning Committee.
Camp Knot a Phe Board and Planning Committee.

🎉 Events Beyond Camp

In addition to Camp Knot a Phe, ANPAD has hosts family-friendly events throughout the year  for all ages —water park days, movie nights, bowling outings, cooking classes, holiday parties, and more—all designed to bring the community together in fun, supportive, and inclusive ways.