irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $108KCOMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES.
- #2 $76KEDUCATION - PROVIDES INFORMATION AND EDUCATION THROUGH PUBLICATION AND DISTRIBUTION OF NEWSLETTERS, BROCHURES AND SCIENCE UPDATES.
named programs · 2 · from sources
What they call their work
Community Outreach
Provides workshops, seminars, and symposiums on Huntington's disease through a network of chapter affiliates and branches throughout the United States
Education
Provides information and education through publication and distribution of newsletters, brochures, and science updates
activities · 1 group
What they do
-
Disease-Specific Clinical & Patient Education 2 activities
- Distributes educational materials on Huntington's diseaseProvides information and education about Huntington's disease through the publication and distribution of newsletters, brochures, and science updates.
- Hosts educational workshops and seminars on Huntington's diseaseProvides workshops, seminars, and symposiums on Huntington's disease through a network of chapter affiliates and branches across the United States.
-
financials · form 990 · fy2024
revenue
Total revenue$3.21M
Contributions & grants$3.21M100%
Program service revenue$00%
Investment income$00%
Other revenue$234
expenses
Total expenses$3.48M
Program expenses93%
Admin / overhead0%
Fundraising7%
Salaries & benefits$0
Grants paid out$13K
Largest expense lineOther
balance sheet
Total assets$611K
Cash$581K
Investments$0
Liabilities$22K
Net assets$588K
Liquid reserves2.0 mo
5 years on record · 2020–2024 · YoY revenue -1.4%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 8
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| ROSEMARY COLUCCIO | CHIEF OPERATIONS OFFICER | 35 | $318K |
| LOUISE VETTER | CHIEF EXECUTIVE OFF (THRU 7/12/2024) | 35 | $316K |
| ARIK JOHNSON | CHIEF MISSION OFFICER | 35 | $233K |
| JAMISON SKALA | DIRECTOR, NATIONAL DEVELOPMENT | 35 | $204K |
| REBECCA CHAN | CONTROLLER | 35 | $165K |
| DEBORAH BOYD | REGIONAL DEVELOPMENT DIRECTOR | 35 | $143K |
| JESSICA MARSOLEK | ASSISTANT DIRECTOR, MISSION PROGRAMS | 35 | $132K |
| NICHOLE MENDOZA | REGIONAL DEVELOPMENT OFFICER PACIFIC WEST | 35 | $124K |
board members · 17
- AMBER SOUTHWELL PHD — TRUSTEE
- ANGELA ALLEN — TREASURER
- BETH HOFFMAN — TRUSTEE
- CHRISTOPHER DECESARIS — TRUSTEE
- DOMINIQUE THOMAS — TRUSTEE
- ERIN FURR-STIMMING MD — TRUSTEE
- JAY HUGHES — SECRETARY
- JEFF CARROLL — TRUSTEE
- JEFFREY BROWN — TRUSTEE
- JENNE COLER-DARK — CHAIR ELECT
- JONATHAN KLEIN ESQ — TRUSTEE
- KAMRAN ALAM — TRUSTEE
- KELSEY PORTER — TRUSTEE (THRU 6/2024)
- LESLIE M THOMPSON PHD — TRUSTEE
- MARK COE — TRUSTEE
- TERESA SRAJER — CHAIR
- VICKI WHEELOCK MD — TRUSTEE
relationships · 1
Who they work with
- Chapter Affiliates and Branches Network — Network of local chapters and branches delivering community outreach and education programs across the United States.
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.
- Educational Dissemination to Improve Awareness and Understandingmethodology: educational_disseminationBy distributing accessible educational materials, the organization increases public and patient understanding of Huntington’s disease because consistent, science-based information empowers individuals to seek care, participate in research, and reduce stigma.
- Network-Based Community Outreachmethodology: network_based_outreachBy leveraging a decentralized network of chapter affiliates and branches, the organization amplifies its reach and impact because localized, community-driven efforts are more effective at engaging affected populations and building trust around sensitive health issues like Huntington’s disease.