named programs · 3 · from sources
What they call their work
Education Outreach
Offers educational materials and presentations to medical professionals and the public about rare syndromes
Family Support Program
Provides resources and emotional support to families affected by cardio-facio-cutaneous conditions
Research Initiative
Supports scientific research into cardio-facio-cutaneous syndromes to improve diagnosis and treatment
activities · 1 group
What they do
-
Charitable and Educational Support Programs 1 activity
- Family support, research, and education programsConducts activities in family support, research, and education aimed at improving quality of life.
-
financials · form 990 · fy2024
revenue
Total revenue$207K
Contributions & grants$101K49%
Program service revenue$58K28%
Investment income$12K6%
Other revenue$36K
expenses
Total expenses$401K
Program expenses52%
Admin / overhead48%
Fundraising0%
Salaries & benefits$172K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$345K
Cash$345K
Investments$0
Liabilities$0
Net assets$345K
Liquid reserves10.3 mo
3 years on record · 2020–2024 · YoY revenue +12.2%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 2
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| Troy Greisen | Former Executive Director | 5 | $71K |
| Tuesdi Dyer | Executive Dir. | 5 | $20K |
board members · 7
- Alexis Nash — President
- Darin Iacobelli — Treasurer
- Glenda Hux — Secretary
- Jeff Kohler — Past President
- Pilar Magoulas — Vice President
- Richard Boyce — Board Member
- Vidya Ramabadran — Board Member
strategies · 1
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.
- Integrated Support, Research, and Education Modelmethodology: integrated_support_research_educationBy integrating family support, research, and education, the organization produces improved quality of life because combining these elements creates a synergistic impact that addresses both immediate needs and systemic drivers of health outcomes.