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ARIZONA PKU AND ALLIED DISORDERS
Goodyear, AZ · EIN 274283489 · Form 990 · FY2021 · NTEE E70 · Health Care · Micro (<$100K) · anpadnews.org
revenue
$14K
expenses
$57K
net assets
$505K
employees
0
volunteers
10
program ratio
100%
mission · from form 990

Arizona Network for PKU and Allied Disorders (ANPAD) was founded in 2011 by PKU parents, patients and medical professionals with the goal to fill the void of support groups offered to patients and families affected by PKU and allied genetic disorders. The purpose is to serve individuals and families in Arizona affected by PKU and other in-born errors of metabolism requiring protein restricted dietary treatment. This is accomplished through camps, cooking workshops, and other related activities.

profile · synthesized from sources

Arizona PKU and Allied Disorders (ANPAD) is a nonprofit organization supporting individuals and families affected by phenylketonuria (PKU) and related metabolic disorders. The organization provides community-building events, educational programs, and an annual family camp—Camp Knot a Phe—offering emotional support, practical resources, and connection for those managing protein-restricted diets and medical treatments. Based in Arizona, ANPAD collaborates with medical professionals and hospitals to serve the metabolic disorder community.

irs program accomplishments · form 990 part iii · fy2021

what they reported doing

Program narrative the organization filed with the IRS. Ordered by program spending.

  1. #1 primary $0
    The Night Under the Stars fund raising program has been the primary source of revenue generation outside of miscellaneous donations and grants. Similar to the summer camp program, this event was cancelled and not held due to Covid-19. ANPAD plans to resume the fundraiser in fiscal year 2024. Since fiscal year 2016, the Night Under the Stars program has generated $116,358 in revenue to support other programs. The expenditures associated with this fund raising event since 2016 have equaled $34,870
  2. #2 $4K
    The Administrative Program supports all other ANPAD programs. This program noes not generate revenue. It serves as an administrative program that performs accounting, procurement, web hosting, tax filing, and related activities.
named programs · 5 · from sources

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
activities · 3 groups

what they do

  • PKU and Metabolic Disorder Support Programs 9 activities
    • Facilitate support groups
      Provides support groups for patients and families affected by PKU and allied genetic disorders in Arizona.
    • Host educational programs
      Organizes and hosts educational programs, such as "Navigating PKU," for individuals with PKU, their caregivers, and family members, offering both in-person and virtual attendance. These sessions cover topics like treatment options (e.g., Palynziq) and managing metabolic disorders.
    • Host educational programs and sessions
      Hosts 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
      Organizes 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
      Organizes 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 and host Camp Knot a Phe
      Organizes 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.
    • Provide educational programs and sessions
      Organizes 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 support groups
      Provides support groups for patients and families affected by PKU and allied genetic disorders in Arizona.
    • Provide support groups
      Provides support groups for patients and families affected by PKU and allied genetic disorders in Arizona.
  • Family Resource Fairs and Community Events 3 activities
    • Host community and family-friendly events
      Hosts 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.
    • Organize family-friendly community events
      Hosts various family-friendly community events throughout the year, including bowling outings, baseball games, water park days, movie nights, cooking classes, and holiday parties, to foster connection and shared experiences among metabolic patients and their families.
    • Organize family-friendly community events
      Organizes 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.
  • Specialized Diet Meal Preparation 1 activity
    • Provide low-phenylalanine meals at events
      Provides low-phenylalanine meals for in-person attendees at events to accommodate dietary restrictions.
financials · form 990 · fy2021
revenue
Total revenue$14K
Contributions & grants$9627%
Program service revenue$13K93%
Investment income$00%
Other revenue$0
expenses
Total expenses$57K
Program expenses100%
Admin / overhead0%
Fundraising0%
Salaries & benefits$0
Grants paid out$0
Largest expense lineOther
balance sheet
Total assets$505K
Cash$505K
Investments$0
Liabilities$0
Net assets$505K
Liquid reserves106.9 mo
2 years on record · 2020–2021 · YoY revenue -95.9%
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.
+ 9 more