activities · 9
what they do
direct service · 9
- Facilitate support groups PKU and Metabolic Disorder Support ProgramsProvides support groups for patients and families affected by PKU and allied genetic disorders in Arizona.
- Host community and family-friendly events Community Health & Resource FairsHosts various community and family-friendly events throughout the year in Arizona, including the March Fun Fest, Arizona Diamondbacks games, water park days, movie nights, bowling outings, cooking classes, and holiday parties, to foster connection among metabolic patients and their families.
- Host educational programs and sessions PKU and Metabolic Disorder Support ProgramsHosts educational programs like "Navigating PKU" and sessions on treatment options such as Palynziq for individuals with PKU, their caregivers, and family members, offering both in-person and virtual attendance.
- Organize and host Camp Knot a Phe PKU and Metabolic Disorder Support ProgramsOrganizes and hosts an annual summer camp, Camp Knot a Phe, for approximately 140-200 individuals and families affected by PKU and allied metabolic disorders in Prescott, Arizona. The camp provides low-protein meals, educational workshops, and social activities, and is supported by volunteers.
- Organize and host Camp Knot a Phe PKU and Metabolic Disorder Support ProgramsOrganizes and hosts an annual summer camp, Camp Knot a Phe, in Prescott, Arizona, for approximately 140-200 individuals and families affected by PKU and allied metabolic disorders. The camp provides low-protein meals, educational workshops, and social activities, and is supported by volunteers.
- Organize family-friendly community events Community Health & Resource FairsOrganizes various family-friendly community events throughout the year, including outings to Arizona Diamondbacks games, March Fun Fest (bowling, mini golf, arcade games), water park days, movie nights, cooking classes, and holiday parties, to foster connection among metabolic patients and their families.
- Provide educational programs and sessions PKU and Metabolic Disorder Support ProgramsOrganizes and hosts educational programs, such as "Navigating PKU," and sessions focused on treatment options like Palynziq for individuals with PKU, their caregivers, and family members, offering both in-person and virtual attendance.
- Provide low-phenylalanine meals at events Specialized Dietary Meal PreparationProvides low-phenylalanine meals for in-person attendees at events to accommodate dietary restrictions.
- Provide support groups PKU and Metabolic Disorder Support ProgramsProvides support groups for patients and families affected by PKU and allied genetic disorders in Arizona.
strategies · 11
how they think
Theories of action extracted from this org's own source material. Click any to see the full field of orgs running the same approach.
- Community Building and Support Networks community_support_modelThe organization fosters a strong community by providing opportunities for individuals and families affected by metabolic disorders to connect, share experiences, and build supportive relationships through events, support groups, and specialized programming.
- Community building and support networks community_support_modelThe organization builds community and provides support by creating opportunities for individuals and families affected by metabolic disorders to connect, share experiences, and engage through events, support groups, and specialized programming, fostering a sense of belonging and mutual aid.
- Community building and support networks community_support_modelThe organization fosters community and provides support by creating opportunities for individuals and families affected by metabolic disorders to connect, share experiences, and build relationships through events, support groups, and specialized programming.
- Customized emergency preparedness emergency_preparednessThe organization emphasizes and advises on the importance of emergency preparedness, recommending individuals with dietary restrictions or special needs customize their kits and stock essential supplies for various situations, including when away from home.
- Customized emergency preparedness emergency_preparednessThe organization emphasizes the importance of emergency preparedness for individuals with dietary restrictions or special needs, recommending personalized kits and supplies for various situations (home, car) to ensure safety and continuity of care during disasters.
- Emergency Preparedness Advocacy emergency_preparednessThe organization advocates for emergency preparedness, especially for individuals with metabolic disorders, by recommending customized kits and supplies to ensure safety and continuity of care during unforeseen events.
- Family-Centered Programming family_centered_programmingThe organization designs programs, such as Camp Knot a Phe, to be family-centered, providing inclusive experiences for all family members affected by metabolic disorders, including those with specific dietary and medical needs.
- Family-centered programming family-centered_programmingThe organization designs programs, such as family camps, to be inclusive and cater to the entire family unit, including those with protein-restricted diets and specific medical needs, to foster connection and shared experiences within the metabolic disorder community.
- Family-centered programming family-centered_programmingThe organization provides programming, such as family camps, that are designed to include and support entire families affected by metabolic disorders, including those with specific dietary needs.
- Volunteer-Driven Operations volunteer_driven_modelThe organization operates entirely through volunteer labor, leveraging the dedication of affected families, patients, and medical professionals to deliver services and support.
- Volunteer-driven operations volunteer-driven_organizationThe organization operates entirely through volunteer labor, primarily led by affected families, patients, and medical professionals, to deliver services and support.
named programs · 5
what they call their work
ANPAD Day at the Ballpark
Family-friendly community outing to an Arizona Diamondbacks game, fostering connection and visibility while raising funds for ANPAD
Camp Knot a Phe
Annual family camp for individuals with PKU and allied metabolic disorders and their families, featuring recreational activities, educational workshops, medical support, and community-building events in Prescott, AZ
Emergency Preparedness Initiative
Resource guidance for metabolic patients and families to create emergency kits with necessary medical formulas, low-protein foods, and supplies for disaster readiness
Navigating PKU Educational Program
Educational event focused on adults living with PKU, offering expert presentations on emotional and social challenges, coping strategies, and community support; available in-person and virtually
Year-Round Community Events
Organized gatherings including water park days, movie nights, bowling, cooking classes, and holiday parties to build community and support among metabolic disorder families
relationships · 39
who they work with
- 20/30 Club of Scottsdale Partner — Sponsored the annual Camp Knot a Phe.
- ASU Culinary Team Partner — Collaborates with the ASU Culinary Team to prepare low-protein meals for Camp Knot a Phe.
- Ajinomoto Cambrooke Funder — Sponsor of Camp Knot a Phe.
- Ann Hall Partner — Co-founded ANPAD and serves as Co-President.
- Arizona Diamondbacks Partner — Hosts a "Day at the Ballpark" event with the Arizona Diamondbacks, where a portion of ticket sales supports ANPAD.
- Bankers' Trust Partner — Sponsored the annual Camp Knot a Phe.
- Banker’s Trust Funder — Sponsor of Camp Knot a Phe.
- Biomarin Funder — Sponsor of Camp Knot a Phe.
- Biomarin Partner — Supported the annual Camp Knot a Phe through contributions, fundraising, and volunteerism.
- Cambrooke Partner — Sponsored the annual Camp Knot a Phe.
- Cycle Vita Funder — Sponsor of Camp Knot a Phe.
- Dr. Alec Partner — Opened his home to parents of children with PKU and allied metabolic disorders, leading to the formation of ANPAD.
- EC70 Partner — Sponsored the annual Camp Knot a Phe.
- Fat Cats Entertainment Center Partner — Host venue for the ANPAD March Fun Fest community event.
- Horizon Funder — Sponsor of Camp Knot a Phe.
- Horizon Partner — Supported the annual Camp Knot a Phe through contributions, fundraising, and volunteerism.
- Kleins pickles Funder — Sponsor of Camp Knot a Phe.
- Kristi Smith Partner — Co-founded ANPAD.
- Margaret Delaney Partner — Co-founded ANPAD.
- Mark Stanley Partner — Co-founded ANPAD.
- Matt Smith Partner — Co-founded ANPAD.
- Mrs. Alec Partner — Opened her home to parents of children with PKU and allied metabolic disorders, leading to the formation of ANPAD.
- Nexus Funder — Sponsor of Camp Knot a Phe.
- Nutricia Funder — Sponsor of Camp Knot a Phe.
- Nutricia Partner — Sponsored the annual Camp Knot a Phe.
- PKU Perspectives Funder — Sponsor of Camp Knot a Phe.
- PTC Bio Partner — Contact person for event RSVP is from PTC Bio.
- Passport Coffee and Tea Partner — Sponsored the annual Camp Knot a Phe.
- Phoenix Children's Hospital Partner — Collaborates with the metabolic team of Phoenix Children's Hospital to organize Camp Knot a Phe.
- Phoenix Children’s Hospital Partner — Collaborates with the metabolic team from Phoenix Children's Hospital for Camp Knot a Phe.
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