named programs · 4 · from sources
What they call their work
G6PD Lifestyle Guide
Comprehensive resource providing information on managing G6PD deficiency through nutrition, medication awareness, and lifestyle choices including alcohol, smoking, exercise, and sleep.
Grocery Shopping Guide
Resource categorizing foods into "Steer Clear," "Caution," and "Safe" lists to help individuals with G6PD deficiency avoid potential dietary triggers.
Medication Awareness Guide
Educational guide listing drugs, chemicals, and supplements that may trigger hemolytic anemia in individuals with G6PD deficiency, organized by category including antibiotics, antimalarials, and OTC medications.
Newborn Screening Campaign
Advocacy initiative focused on promoting early detection of G6PD deficiency in newborns through expanded screening programs.
activities · 3 groups
What they do
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Rare Genetic Disease Research and Advocacy 6 activities
- Advocate for universal newborn screening for G6PD deficiencyConducts awareness campaigns and advocacy to promote routine newborn screening for G6PD deficiency across the United States, including successful efforts that led to inclusion in New York State’s newborn screening panel.
- Co-found and participate in global health task forcesCo-founded a global G6PDD-COVID-19 task force to increase understanding of G6PD deficiency and its implications during public health emergencies.
- Conduct research on G6PD deficiency and related health outcomesConducts and publishes peer-reviewed research on G6PD deficiency, including its role in neonatal health and severity of illness during the COVID-19 pandemic, with findings published in Pediatrics and presented internationally.
- Fund G6PD deficiency awareness campaigns through event proceedsDirects all proceeds from the G64Health Golf Tournament & Celebration to support its G6PD deficiency awareness initiatives, including public education and advocacy efforts.
- Provide educational resources on G6PD deficiencyDistributes research-based information, handouts, and videos about G6PD deficiency to individuals, families, and healthcare providers. Includes materials on managing the condition, avoiding harmful substances, and recognizing signs of severe neonatal jaundice.
- Support implementation of newborn G6PD testing in hospitalsOversees the implementation of universal G6PD deficiency testing at Mount Sinai Hospital following the 2022 Brody-James Law and sponsors webinars to support other states in adopting similar screening protocols.
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Charity Golf Tournament Fundraiser 1 activity
- Host annual golf tournament and celebration eventOrganizes an annual public event featuring a 9-hole, 6-club golf game and driving range contest at Santapogue Creek County Golf Course, followed by a celebration with food, beverages, and raffles to engage supporters.
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Uncategorized 1 activity
- Facilitate access to G6PD enzyme assay testingSupports access to commercial G6PD enzyme assay testing with a 2–3 day turnaround and cost under $100 to improve diagnostic availability.
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financials · form 990EZ · fy2024
revenue
Total revenue$7K
Contributions & grants$7K100%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$22K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$30K
Cash—
Investments—
Liabilities—
Net assets$30K
5 years on record · 2020–2024 · YoY revenue -76.4%
relationships · 16
Who they work with
- Brody Partner — Namesake of the foundation's awareness campaign, illustrating the consequences of undiagnosed G6PD deficiency in newborns.
- Central Michigan University Partner — Academic institution where Dr. Dan J. Vick conducted research on G6PD deficiency and COVID-19 during his faculty tenure.
- Dale Baker Partner — Provided foundational support, knowledge, and patience in forming the nonprofit.
- Dawn Daisley Designs Partner — Designed the foundation's logo and provided introductory exposure.
- E Donald Conroy Golf Course Partner — Host venue for the G64Health Golf Tournament
- E. Donald Conroy Golf Course Partner — Host venue for the 2nd Annual Golf Tournament & Celebration.
- Elizabeth Bostic Funder — Provided an education grant for continuing medical education on G6PD deficiency and newborns.
- Facebook Network — Hosts a public presence for the G6PD Deficiency Foundation on Facebook to share information and raise awareness.
- LeW's Info Partner — Collaborates on providing information about Chinese herbs and G6PD deficiency.
- Lily Flanigan’s Pub Partner — Venue for the post-golf celebration event
- Michael Silverberg, D.Phil. Partner — Provided expert information on G6PD deficiency to support the foundation's educational content.
- Mount Sinai Hospital Partner — Partner institution where universal G6PD deficiency testing was implemented in the newborn nursery.
- Santapogue Creek County Golf Course Partner — Host venue for the driving range contest associated with the G64Health Golf Tournament
- Stanford University Partner — Professional affiliation of advisory board member Dr. Vinod Bhutani, supporting the foundation’s medical guidance and global screening initiatives.
- Walk-In-lab Partner — Collaborates with commercial clinical laboratory to provide accessible G6PD enzyme assay testing.
- YouTube Partner — Hosts educational video content for public access
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.
- Education as Preventionmethodology: education-for-preventionBy providing evidence-based education about G6PD deficiency and its triggers, the foundation enables individuals and clinicians to avoid harmful exposures and prevent hemolytic crises, because knowledge empowers proactive health management.
- Family-Centered Risk Identificationmethodology: family-based_screening_advocacyBy promoting family-based screening and educating about X-linked inheritance, the foundation identifies undiagnosed cases and reduces intergenerational risk, because understanding genetic transmission enables targeted prevention and early intervention.
- Universal Newborn Screening Advocacymethodology: newborn_screening_campaignBy advocating for universal newborn screening and legislative mandates, the foundation aims to identify G6PD deficiency early, because early detection enables timely family education and prevents severe outcomes like kernicterus and hemolytic anemia.