Arizona Pku and Allied Disorders

Arizona Pku and Allied Disorders, also known as the Arizona Network for PKU and Allied Disorders (ANPAD), is a nonprofit organization dedicated to serving individuals and families affected by phenylketonuria (PKU) and related metabolic genetic disorders in Arizona. Founded in 2011, ANPAD aims to fill the gap in support and resources available to patients and families coping with PKU and allied disorders. The organization operates as a registered 501(c)(3) entity under EIN 274283489.

Mission and Purpose

ANPAD’s primary mission is to support patients and families dealing with PKU and allied disorders, such as Citrullinemia, Maple Syrup Urine Disease (MSUD), and Organic Acidemias. These are rare inherited metabolic conditions characterized by enzyme deficiencies that can cause serious neurological damage if untreated. The organization provides education, advocacy, community engagement, and therapeutic assistance tailored to these rare diseases, particularly focusing on dietary management due to protein metabolism issues inherent in these disorders.

Programs and Activities

One of ANPAD’s signature initiatives is "Camp Knot a Phe," a volunteer-run summer camp designed to provide unforgettable experiences for children and families affected by PKU and allied disorders. The camp offers a supportive environment where individuals affected by these metabolic conditions can connect, learn, and enjoy recreational activities in a safe setting that accommodates their dietary and medical needs.

In addition to the camp, ANPAD hosts fundraising events and offers support groups throughout Arizona to foster a strong community network. The organization collaborates with medical professionals, parents, and individuals living with PKU to raise awareness and improve access to necessary treatments.

History and Leadership

ANPAD was founded by a group of PKU parents, patients, and healthcare professionals, including Kristi Smith (an adult with PKU), her husband Matt Smith, Margaret Delaney, Ann Hall, Mark Stanley, and Sarah Cox MS, CGC. Since its inception, the organization has grown substantially and is governed by a board of directors with dedicated roles. As of recent records, leadership includes Co-Presidents Ann Hall and Jami Puerta, Program Director Jodi Spidell, and Vice President Danielle Germany, RN.

Funding and Support

The organization relies primarily on donations and sponsorships from individuals and corporate partners. Contributions fund programs like Camp Knot a Phe and community outreach efforts. Sponsors have included Nutricia, Vita Flo, Cambrooke, Passport Coffee and Tea, Bankers' Trust, and others. ANPAD's financial records show consistent contributions supporting its nonprofit activities, with total assets reported over $547,000 and no liabilities as per the latest fiscal disclosures.

Impact

Through educational initiatives, community support, and specialized programming, Arizona Pku and Allied Disorders plays a critical role in improving the quality of life for those affected by PKU and allied metabolic conditions in Arizona. It serves as a vital resource for patients, families, and healthcare providers, enhancing awareness and practical support for managing these rare disorders.

Note: This article is based on publicly available information about the Arizona Pku and Allied Disorders organization as of 2025.