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MACIES MISSION INC
Wantagh, NY · EIN 920886413 · Form 990EZ · FY2025 · NTEE S12 · Community Improvement · Micro (<$100K) · maciesmission.org
revenue
$60K
expenses
$63K
net assets
$17K
employees
—
mission · from form 990

We are a non-profit organization dedicated to raising awareness and funding for research of Pompe disease and other rare diseases.

profile · synthesized from sources

Macie's Mission is a nonprofit founded by the family and friends of Macie Harris, a child living with Pompe disease. The organization raises awareness and funds for research into Pompe disease and other rare diseases, primarily through community events like Pints for Pompe. It supports Dr. Priya Kishnani’s research at Duke Children’s Hospital and provides support to affected families.

named programs · 3 · from sources

What they call their work

Macie’s Mission Podcast
Podcast sharing personal stories about living with Pompe disease and the journey of Macie’s Mission to raise awareness
Pints for Pompe
Annual fundraising event featuring trivia, food, drinks, and raffles to support Pompe disease research and awareness
Rare Disease Day Event
Annual family-friendly event in February to honor Rare Disease Day and support the rare disease community
activities · 4 groups

What they do

  • Pediatric Medical Care and Research Support 1 activity
    • Funding Pompe disease research
      Allocates over 45% of donations to research on Pompe disease, including support for Dr. Priya Kishnani's work at Duke Children's Hospital.
  • Charity Event Organization 1 activity
    • Organizing annual fundraising events
      Hosts recurring fundraising events including Pints for Pompe in August and a Rare Disease Day event in February, featuring trivia, community engagement, and donor recognition, with proceeds supporting research and programs.
  • Disease-Specific Clinical & Patient Education 1 activity
    • Raising awareness for Pompe disease
      Produces the Macie’s Mission Podcast and hosts awareness campaigns to share lived experiences and educate the public about Pompe disease.
  • Rare Genetic Disease Research and Advocacy 1 activity
    • Supporting research to improve detection and treatments for Pompe disease
      Funds and supports research initiatives aimed at improving early detection, developing treatments, and advancing the search for a cure for Pompe disease.
financials · form 990EZ · fy2025
revenue
Total revenue$60K
Contributions & grants$12K20%
Program service revenue——
Investment income$440%
Other revenue—
expenses
Total expenses$63K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$34K
balance sheet
Total assets$17K
Cash—
Investments—
Liabilities—
Net assets$17K
2 years on record · 2024–2025 · YoY revenue +3.0%
leadership · form 990 part vii · fy2025

Who runs it

board members · 12
  • Alex Moody — Board Member
  • Bianca Murphy — Board Member
  • Bobby York — Board Member
  • Brian Driscoll — Board Member
  • Eddie Jordan — Board Member
  • Erin Citrano — Board Member
  • Joe Citrano — Board Member
  • Julie Duenges — Board Member
  • Justin Moody — Creative Director
  • Kevin Murphy — Board Member
  • Lauren Conniff — Board Member
  • Rosalia Melaccio — Board Member
relationships · 14

Who they work with

  • Bright Eye Beer Co Partner — Host venue for the Pints for Pompe fundraising event
  • Capogna Orthodontics Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • Dr. Priya Kishnani Partner — Partner in Pompe disease research at Duke Children's Hospital
  • Duke Children’s Hospital Partner — Hosts the Pompe disease research program supported by Macie's Mission.
  • Duke Children’s Hospital Partner — Institutional partner for Pompe disease research
  • Jani of Wantagh Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • John Gaffney Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • Marty Brown Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • North Stream Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • Seaford Lions Club of New York Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • Squid City Apparel Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • The Apple Family Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • The Deere Family Partner — 2026 sponsor of the Pints for Pompe fundraising event.
  • Zeffy Partner — Uses Zeffy as a payment platform for donations.
strategies · 3

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Awareness-Driven Early Diagnosis
    methodology: improving_diagnosis_through_awareness
    By raising public and medical community awareness of variable symptom progression in rare diseases like Pompe, we reduce delayed diagnosis, because increased recognition of atypical presentations leads to earlier clinical suspicion and testing.
  • Multidisciplinary Clinical Research Approach
    methodology: multidisciplinary_care
    By using a multidisciplinary approach to care and research, we advance therapies for genetic disorders, because integrating clinical care, immune response studies, and large-scale trials accelerates both treatment development and patient outcomes.
  • Research Partnership Model
    methodology: research-partnership
    By directing donated funds to support specific researchers at major medical institutions, we accelerate rare disease research, because sustained, targeted funding enables long-term program development and clinical innovation.