named programs · 1 · from sources
What they call their work
A Rare Affair
Annual fundraising event honoring children diagnosed with rare disorders; raises funds for research, treatment, and partner organizations such as Special Olympics NY
activities · 3 groups
What they do
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Genetic and Neurological Disease Research Funding 1 activity
- Funding research and family medical expenses for X & Y chromosomal variationsDirects half of the proceeds from its annual event to The Focus Foundation for research on X & Y chromosomal variations, and allocates the other half to either cover medical expenses for an honored child or support a foundation dedicated to their specific syndrome.
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Charity Event Organization 1 activity
- Hosting annual fundraising events to support children with rare diseasesOrganizes annual events such as "A Rare Affair" that bring together hundreds of attendees and local businesses to raise funds and awareness for children with rare diseases. Events have raised over $40,000 (2017) and over $65,000 (2018) for affected children and related causes.
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Rare Genetic Disease Research and Advocacy 1 activity
- Raising awareness about rare and genetic diseases affecting childrenConducts advocacy efforts to raise public awareness about rare and genetic diseases, emphasizing that 30 million Americans and 350 million people worldwide are affected, half of whom are children, and that 30% of affected children do not survive to age 5. Also highlights that 95% of rare diseases lack FDA-approved treatments.
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financials · form 990EZ · fy2020
revenue
Total revenue$64K
Contributions & grants$8K13%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$64K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$63K
balance sheet
Total assets$12K
Cash—
Investments—
Liabilities—
Net assets$12K
1 years on record · 2020–2020
relationships · 52
Who they work with
- ALR Contracting Inc. Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Ackerman Insurance Agency Partner — $1000+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Adams Family Farm Partner — $100+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Alley's Agway Partner — $250+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Bank of Millbrook Partner — $100+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Barto Landscaping LLC Partner — $1000+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Berlinghoff Electric Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Black Top Maintenance Partner — $250+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Built by Simmons Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- CALE Communications Partner — $100+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Crown Energy Corp Partner — $5000+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Cure JM Foundation Partner — Recipient of 50% of proceeds from the 2017 A Rare Affair event, with donation scheduled for Giving Tuesday.
- Dutchess Beer Company Partner — $1500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Emery Webb Architects Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Farmscapes Land Management Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Funshine Party Rentals of Red Hook Partner — $100+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- GK Electric Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Get Out on a Limb Tree Service Partner — $1500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- HV Events LLC Partner — $100+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Hudson Ear, Nose & Throat Associates Partner — $250+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Irving Farm Coffee Roasters Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Junior's Diesel Repair Partner — $1000+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Koerner Construction Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- LP Transportation Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- MHK Welding Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Matt's Used Auto Parts Partner — $1000+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- McCarthy's Pharmacy Partner — $100+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Mike George Plumbing Partner — $750+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Millbrook Cabinetry & Design Partner — $750+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
- Minnow & Co. Motors Partner — $500+ sponsor of Coltons XXXTRAORDINARY CAUSE LTD
+ 22 more
strategies · 4
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 Fundraising Integrationmethodology: awareness-and-fundraising-integrationBy combining awareness campaigns about rare chromosomal conditions with fundraising initiatives, the organization generates community support and funds because increased public understanding leads to greater empathy, participation, and financial giving.
- Early Diagnosis and Intervention Modelmethodology: early_interventionBy promoting early diagnosis and intervention for children with X & Y chromosomal variations and other rare conditions, the organization improves long-term outcomes because timely clinical and supportive responses mitigate developmental delays and increase treatment efficacy.
- Family-Led Advocacy Expansionmethodology: family-led advocacy expansionBy leveraging personal experience with rare conditions, the organization extends advocacy and support to a broader population of affected families because lived experience builds authentic connections and trust, increasing engagement and reach.
- Resilience Storytelling for Community Engagementmethodology: resilience-through-sportsBy sharing stories of resilience—particularly through sports—of individuals with rare conditions, the organization inspires community support and fundraising because personal narratives create emotional connections that drive engagement and giving.