named programs · 3 · from sources
What they call their work
AVM Awareness in Schools & First Responders Training
Provides annual education and training to schools and first responders in New York on identifying and responding to brain AVMs, aneurysms, and strokes.
Research Study: Non-Invasive Hemodynamic Evaluation in Cerebrovascular Disease
Collaborates on research using carotid duplex to study cerebrovascular disease in adults, including those with AVMs, aneurysms, and arterial stenosis.
“Paiges Law” Advocacy Initiative
Advocates for amending New York State’s Public Health Law to expand newborn and prenatal screening to include genetic testing for Hereditary Hemorrhagic Telangiectasia (HHT) and Thoracic Aortic Aneurysms and Dissections (TAAD).
activities · 7 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Advocacy for AVM and aneurysm awareness in state education systemsAdvocated for the inclusion of AVM and aneurysm awareness educational materials in the New York State kindergarten registration process to inform families about genetic testing and carrier status for HHT, TAAD, Marfan syndrome, and related disorders.
- Advocacy for expanded newborn screening in New York StateAdvocated for a legislative amendment to the New York State Public Health Law to expand the newborn screening panel to include genetic testing for HHT (6 genes) and TAAD (35 genes), enabling early detection of hereditary hemorrhagic telangiectasia, thoracic aortic aneurysms, Marfan syndrome, and related disorders.
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Disease-Specific Clinical & Patient Education 1 activity
- Community education on brain vascular conditionsConducts annual awareness, education, and training programs in schools and for first responders on identifying and responding to brain AVMs, brain aneurysms, and strokes.
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Biomedical Research and Innovation 1 activity
- Conducting research on non-invasive cerebrovascular assessmentConducts a research study on non-invasive hemodynamic evaluation in cerebrovascular disease using carotid duplex imaging to improve detection and management of related conditions.
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Charity Golf Tournament Fundraiser 1 activity
- Fundraising through school partnerships and eventsConducts an AVM fundraiser in partnership with Smithtown Central School District and organizes raffles and auction experiences using donated products at its annual golf tournament to support its mission.
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Community Health Fairs and Screenings 1 activity
- Health awareness and screening promotionConducts activities related to raising awareness, detection, and screening in health care, particularly focused on cerebrovascular and hereditary conditions.
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Community Festival & Event Production 1 activity
- Hosting community eventsHosted a holiday party and concert event on December 6, 2021, to engage and support the community.
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Uncategorized 1 activity
- Planning and rescheduling of fundraising eventsPostponed its inaugural golf classic event to May 2024 as part of ongoing event planning and community engagement efforts.
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financials · form 990EZ · fy2024
revenue
Total revenue$93K
Contributions & grants——
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$3K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$172K
Cash—
Investments—
Liabilities—
Net assets$172K
3 years on record · 2020–2024 · YoY revenue +77.0%
leadership · form 990 part vii · fy2024
Who runs it
board members · 1
- JENNIFER INTINOLI — EXECUTIVE DIRECTOR OF ADMIN
relationships · 3
Who they work with
- Father Nature's Garden Center Partner — Hosted the foundation's holiday event at its location in St. James, NY
- Nissequogue Golf Club Partner — Hosts the Paige Keely Memorial Golf Classic and provides venue support.
- Smithtown Central School District Partner — Partner in conducting an AVM fundraiser.
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.
- Community Education for Early Cerebrovascular Event Responsemethodology: community_education_first_responder_trainingBy delivering targeted education and training to schools and first responders on recognizing symptoms of brain AVMs, aneurysms, and strokes, the foundation improves early identification and emergency response to cerebrovascular events because trained community actors can act swiftly, reducing time-to-care and improving survival rates.
- Comparative Clinical Research to Understand Cerebrovascular Conditionsmethodology: comparative clinical studyBy conducting comparative clinical studies between healthy controls and individuals with specific cerebrovascular conditions, the foundation generates evidence on hemodynamic differences that can inform clinical understanding and treatment approaches because empirical data reveals physiological patterns not observable through screening or education alone.
- Early Detection Through Prenatal Screeningmethodology: prenatal_awareness_genetic_testingBy promoting prenatal screening awareness and genetic testing for expecting mothers, the foundation enables early identification of carrier status for HHT, TAAD, and Marfan syndrome, thereby increasing the likelihood of timely interventions and improving long-term health outcomes because early knowledge informs proactive care.