irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $65KSupport organization to provide support, understanding, and encouragement to families of individuals with Trisomy 18/13.
- #2 $4KNewsletters, books, brochures, and research to increase public awareness.
named programs · 2 · from sources
What they call their work
Family Support Program
Provides emotional support, understanding, and encouragement to families affected by Trisomy 18/13 through resources and community engagement
Public Awareness and Research Dissemination
Distributes newsletters, books, brochures, and research findings to increase public and medical community awareness of Trisomy 18/13
activities · 2 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Conducts and shares research on Trisomy 18/13Engages in research related to Trisomy 18 and Trisomy 13 and disseminates findings to increase public and professional awareness of these genetic disorders.
- Distributes educational materials about Trisomy 18/13Produces and disseminates newsletters, books, and brochures to inform the public and families about Trisomy 18 and Trisomy 13, enhancing awareness and understanding of these conditions.
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Familial Support for Rare Genetic Conditions 1 activity
- Provides emotional and informational support to families affected by Trisomy 18/13Offers direct support services to families of individuals with Trisomy 18 and Trisomy 13, including counseling and guidance resources. This support is ongoing and tailored to family needs.
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financials · form 990 · fy2024
revenue
Total revenue$180K
Contributions & grants$70K39%
Program service revenue$102K57%
Investment income$8K4%
Other revenue$124
expenses
Total expenses$154K
Program expenses93%
Admin / overhead7%
Fundraising0%
Salaries & benefits$0
Grants paid out$0
Largest expense lineProfessional Fees
balance sheet
Total assets$582K
Cash$582K
Investments$0
Liabilities$0
Net assets$582K
Liquid reserves45.5 mo
3 years on record · 2020–2024 · YoY revenue -5.3%
leadership · form 990 part vii · fy2024
Who runs it
board members · 18
- Angie McCauley — Director
- Dave VanHerreweghe — Director
- Dr John Carey — Founding Profes
- Gina Csontos — Director
- Glenn Csontos — Director
- Hal Holladay — Founding Parent
- Jennifer Sogge — Vice President
- Jim Dye — Director
- Kelly Hernandez — Vice President
- Kris Holladay — Founding Parent
- Leslie Carey — Director
- Micah McCauley — Director
- Nick Holladay — Executive Dir.
- Randy Krotzer — Vice President
- Renae Bradley — Director
- Sal Hernandez — Vice President
- Steve Sogge — Vice President
- Terre Krotzer — Vice President
strategies · 2
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.
- Family Support as Engagement Mechanism 182 orgsmethodology: family_supportBy providing ongoing emotional and informational support to families, SOFT fosters understanding and encouragement, which strengthens family engagement and sustained participation in the organization’s mission, because empathetic connection builds trust and resilience in high-stress contexts.shared approach: Peer-Led Support →
- Public Awareness Through Knowledge Dissemination 36 orgsmethodology: public_awareness_through_publicationsBy distributing educational publications and research, SOFT increases public awareness of Trisomy 18/13 because accessible, evidence-based information shifts public understanding and reduces stigma around rare chromosomal conditions.shared approach: Research-Advocacy Integration →