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DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$10.2M
Program Spending
75%
of total expenses go to program services
Total Contributions
$9.8M
Total Expenses
▼$11.4M
Total Assets
$17.3M
Total Liabilities
▼$4.6M
Net Assets
$12.6M
Officer Compensation
→$634.3K
Other Salaries
$2.7M
Investment Income
$204.7K
Fundraising
▼$182.9K
Tax Year 2024 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $3M
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
| IRVINE, CA | $300K | Cash | COMMUNITY SERVICES | |
| LA JOLLA, CA | $275.5K | Cash | COMMUNITY SERVICES | |
| NEW YORK, NY | $180K | Cash | COMMUNITY SERVICES | |
THE GENERAL HOSPITAL CORPORATION | SOMERVILLE, MA | $180K | Cash | COMMUNITY SERVICES |
| SACRAMENTO, CA | $73K | Cash | COMMUNITY SERVICES | |
UNIV OF WASHINGTON91-6001537 | SEATTLE, WA | $60K | Cash | COMMUNITY SERVICES |
| HOUSTON, TX | $56K | Cash | COMMUNITY SERVICES | |
| PHILADELPHIA, PA | $55.5K | Cash | COMMUNITY SERVICES | |
VANDERBILT UNIVERSITY MEDICAL CENTER35-2528741 | NASHVILLE, TN | $54K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF ALABAMA BIRMINGHAM63-6005396 | BIRMINGHAM, AL | $50.8K | Cash | COMMUNITY SERVICES |
| COLUMBUS, OH | $50K | Cash | COMMUNITY SERVICES | |
UNIVERSITY OF SOUTH FLORIDA59-3102112 | TAMPA, FL | $50K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF CALIFORNIA SAN DIEGO95-6006144 | LA JOLLA, CA | $49K | Cash | COMMUNITY SERVICES |
RUSH UNIVERSITY MEDICAL CENTER36-2174823 | CHICAGO, IL | $49K | Cash | COMMUNITY SERVICES |
REGENTS UNIVERSITY OF CA LOS ANGELES95-6006143 | LOS ANGELES, CA | $49K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF ROCHESTER MEDICAL CENTER16-0743209 | ROCHESTER, NY | $48K | Cash | COMMUNITY SERVICES |
| NEW YORK, NY | $47.9K | Cash | COMMUNITY SERVICES | |
| CHARLOTTESVILLE, VA | $46K | Cash | COMMUNITY SERVICES | |
BETH ISRAEL DEACONESS MEDICAL CENTER | BOSTON, MA | $45K | Cash | COMMUNITY SERVICES |
WASHINGTON UNIVERSITY43-0653611 | ST LOUIS, MO | $44K | Cash | COMMUNITY SERVICES |
JOHNS HOPKINS UNIVERSITY52-0595110 | BALTIMORE, MD | $43K | Cash | COMMUNITY SERVICES |
| IOWA CITY, IA | $43K | Cash | COMMUNITY SERVICES | |
MOVEMENT DISORDERS FOUNDATION27-1618835 | ENGLEWOOD, CO | $43K | Cash | COMMUNITY SERVICES |
NORTHWESTERN UNIVERSITY36-2167817 | CHICAGO, IL | $42K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF PITTSBURGH PHYSICIANS23-2919472 | PITTSBURGH, PA | $41K | Cash | COMMUNITY SERVICES |
GEORGETOWN UNIVERSITY HD CERC53-0196603 | WASHINGTON, DC | $40K | Cash | COMMUNITY SERVICES |
ALBANY MEDICAL COLLEGE14-1338310 | ALBANY, NY | $40K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF CINCINNATI27-3850988 | CINCINNATI, OH | $38K | Cash | COMMUNITY SERVICES |
DUKE UNIVERSITY MEDICAL CENTER56-0532129 | DURHAM, NC | $37K | Cash | COMMUNITY SERVICES |
HENNEPIN HEALTHCARE RESEARCH INSTITUTE41-1677920 | MINNEAPOLIS, MN | $35K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF COLORADO DENVER84-6000555 | DENVER, CO | $34K | Cash | COMMUNITY SERVICES |
MASSACHUSETTS GENERAL HOSPITAL | CHARLESTOWN, MA | $33K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF UTAH87-6000525 | SALT LAKE CITY, UT | $33K | Cash | COMMUNITY SERVICES |
BARROW NEUROLOGICAL INSTITUTE94-1196203 | PHOENIX, AZ | $33K | Cash | COMMUNITY SERVICES |
CLEVELAND CLINIC FOUNDATION34-0714553 | CLEVELAND, OH | $33K | Cash | COMMUNITY SERVICES |
EMORY UNIVERSITY58-0566256 | ATLANTA, GA | $33K | Cash | COMMUNITY SERVICES |
| LOS ANGELES, CA | $32K | Cash | COMMUNITY SERVICES | |
OCHSNER HEALTH SYSTEM72-0502505 | NEW ORLEANS, LA | $32K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF FLORIDA59-6002052 | GAINESVILLE, FL | $32K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF LOUISVILLE61-1029626 | LOUISVILLE, KY | $32K | Cash | COMMUNITY SERVICES |
INDIANA UNIVERSITY35-6001673 | DETROIT, MI | $28K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF MIAMI59-0624458 | ATLANTA, GA | $28K | Cash | COMMUNITY SERVICES |
VIRGINIA COMMONWEALTH UNIVERSITY54-6001758 | RICHMOND, VA | $27K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF VERMONT HEALTH NETWORK45-2880726 | BURLINGTON, VT | $26.5K | Cash | COMMUNITY SERVICES |
PRISMA HEALTH - MIDLAND58-2296052 | COLUMBIA, SC | $26K | Cash | COMMUNITY SERVICES |
UNIVERSITY NEUROLOGY INC16-1359213 | BUFFALO, NY | $26K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF CONNECTICUT HEALTH CENTER52-1725543 | FARMINGTON, CT | $25K | Cash | COMMUNITY SERVICES |
KANSAS UNIVERSITY ENDOWMENT48-0547734 | KANSAS CITY, KS | $20.6K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF WISCONSIN - MADISON39-6006492 | MADISON, WI | $20K | Cash | COMMUNITY SERVICES |
HENRY FORD HEALTH SYSTEM38-1357020 | DETROIT, MI | $20K | Cash | COMMUNITY SERVICES |
SANFORD HEALTH45-0226909 | FARGO, ND | $20K | Cash | COMMUNITY SERVICES |
STANFORD UNIVERSITY94-6174066 | STANFORD, CA | $20K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF NEBRASKA MEDICAL CENTER47-0049123 | OMAHA, NE | $20K | Cash | COMMUNITY SERVICES |
UCI MOVEMENT DISORDERS PROGRAM95-2226406 | IRVINE, CA | $20K | Cash | COMMUNITY SERVICES |
UNIVERSITY OF MISSISSIPPI MEDICAL CENTER64-6008520 | JACKSON, MS | $20K | Cash | COMMUNITY SERVICES |
OREGON HEALTH & SCIENCE UNIVERSITY93-1176109 | PORTLAND, OR | $20K | Cash | COMMUNITY SERVICES |
| LITTLE ROCK, AR | $20K | Cash | COMMUNITY SERVICES | |
| STONY BROOK, NY | $19.8K | Cash | COMMUNITY SERVICES | |
MEDICAL UNIVERSITY OF SOUTH CAROLINA57-6000722 | CHARLESTON, SC | $19.5K | Cash | COMMUNITY SERVICES |
| STRATFORD, NJ | $19.1K | Cash | COMMUNITY SERVICES | |
UNIVERSITY OF MASSACHUSETTS | WORCESTER, MA | $17K | Cash | COMMUNITY SERVICES |
| MOBILE, AL | $17K | Cash | COMMUNITY SERVICES | |
ERLANGER HEALTH SYSTEM62-6000101 | CHATTANOOGA, TN | $10K | Cash | COMMUNITY SERVICES |
COLE NEUROSCIENCE CLINIC31-1626179 | KNOXVILLE, TN | $10K | Cash | COMMUNITY SERVICES |
SELKIRK NEUROLOGY PLLC82-4852913 | SPOKANE, WA | $10K | Cash | COMMUNITY SERVICES |
| ORLANDO, FL | $7,500 | Cash | COMMUNITY SERVICES | |
ADVENTHEALTH FOUNDATION CENTRAL FLORIDA59-2219301 | ORLANDO, FL | $7,500 | Cash | COMMUNITY SERVICES |
| Total | $3M | |||
$300K
LA JOLLA, CA
$275.5K
NEW YORK, NY
$180K
THE GENERAL HOSPITAL CORPORATION
SOMERVILLE, MA
$180K
SACRAMENTO, CA
$73K
SEATTLE, WA
$60K
HOUSTON, TX
$56K
PHILADELPHIA, PA
$55.5K
NASHVILLE, TN
$54K
BIRMINGHAM, AL
$50.8K
COLUMBUS, OH
$50K
TAMPA, FL
$50K
LA JOLLA, CA
$49K
CHICAGO, IL
$49K
LOS ANGELES, CA
$49K
ROCHESTER, NY
$48K
$47.9K
CHARLOTTESVILLE, VA
$46K
BETH ISRAEL DEACONESS MEDICAL CENTER
BOSTON, MA
$45K
ST LOUIS, MO
$44K
BALTIMORE, MD
$43K
IOWA CITY, IA
$43K
ENGLEWOOD, CO
$43K
CHICAGO, IL
$42K
PITTSBURGH, PA
$41K
WASHINGTON, DC
$40K
ALBANY, NY
$40K
CINCINNATI, OH
$38K
DURHAM, NC
$37K
MINNEAPOLIS, MN
$35K
DENVER, CO
$34K
MASSACHUSETTS GENERAL HOSPITAL
CHARLESTOWN, MA
$33K
SALT LAKE CITY, UT
$33K
PHOENIX, AZ
$33K
CLEVELAND, OH
$33K
ATLANTA, GA
$33K
LOS ANGELES, CA
$32K
NEW ORLEANS, LA
$32K
GAINESVILLE, FL
$32K
LOUISVILLE, KY
$32K
DETROIT, MI
$28K
ATLANTA, GA
$28K
RICHMOND, VA
$27K
BURLINGTON, VT
$26.5K
COLUMBIA, SC
$26K
BUFFALO, NY
$26K
FARMINGTON, CT
$25K
KANSAS CITY, KS
$20.6K
MADISON, WI
$20K
DETROIT, MI
$20K
FARGO, ND
$20K
STANFORD, CA
$20K
$20K
IRVINE, CA
$20K
JACKSON, MS
$20K
PORTLAND, OR
$20K
LITTLE ROCK, AR
$20K
STONY BROOK, NY
$19.8K
CHARLESTON, SC
$19.5K
STRATFORD, NJ
$19.1K
UNIVERSITY OF MASSACHUSETTS
WORCESTER, MA
$17K
$17K
CHATTANOOGA, TN
$10K
KNOXVILLE, TN
$10K
SPOKANE, WA
$10K
$7,500
ORLANDO, FL
$7,500
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2024 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: GROUP
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2024IRS e-File | $10.2M | $9.8M | $11.4M | $17.3M | $12.6M |
| 2023IRS e-File | $9.8M | $9.3M | $11.2M | $18.1M | $13.9M |
| 2022 | $10.7M | $10.5M | $9.4M | $17.4M | $15.2M |
| 2021IRS e-File |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
| Tax Year | Form Type | Source | Documents |
|---|---|---|---|
| 2024 | 990 | IRS e-File | PDF not yet published by IRSView Filing → |
| 2023 | 990 | IRS e-File | PDF not yet published by IRSView Filing → |
| 2022 | 990 | DataIRS e-File |
Financial data: IRS e-Filed Form 990 (Tax Year 2024)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Rosemary Coluccio | Chief Operations Officer | 35 | $286.5K | $0 | $31.7K | $318.2K |
| Louise Vetter | Chief Executive Off (thru 7/12/2024) | 35 | $282K | $0 | $34.2K | $316.1K |
| Victor Sung Md | Past Chair | 6 | $0 | $0 | $0 | $0 |
| Teresa Srajer | Chair | 6 | $0 | $0 | $0 | $0 |
| Angela Allen | Treasurer | 6 | $0 | $0 | $0 | $0 |
| Jenne Coler-Dark | Chair Elect | 6 | $0 | $0 | $0 | $0 |
| Jay Hughes | Secretary | 6 | $0 | $0 | $0 | $0 |
Rosemary Coluccio
Chief Operations Officer
$318.2K
Hrs/Wk
35
Compensation
$286.5K
Related Orgs
$0
Other
$31.7K
Louise Vetter
Chief Executive Off (thru 7/12/2024)
$316.1K
Hrs/Wk
35
Compensation
$282K
Related Orgs
$0
Other
$34.2K
Victor Sung Md
Past Chair
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Teresa Srajer
Chair
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Angela Allen
Treasurer
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Jenne Coler-Dark
Chair Elect
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Jay Hughes
Secretary
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Arik Johnson | Chief Mission Officer | 35 | $218.3K | $0 | $14.6K | $232.8K |
| Jamison Skala | Director, National Development | 35 | $190.9K | $0 | $13.2K | $204.2K |
| Rebecca Chan | Controller | 35 | $120K | $0 | $44.5K |
Arik Johnson
Chief Mission Officer
$232.8K
Hrs/Wk
35
Compensation
$218.3K
Related Orgs
$0
Other
$14.6K
Jamison Skala
Director, National Development
$204.2K
Hrs/Wk
35
Compensation
$190.9K
Related Orgs
$0
Other
$13.2K
Rebecca Chan
Controller
$164.6K
Hrs/Wk
35
Compensation
$120K
Related Orgs
$0
Other
$44.5K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Amber Southwell Phd | Trustee | 6 | $0 | $0 | $0 | $0 |
| Beth Hoffman | Trustee | 6 | $0 | $0 | $0 | $0 |
| Christopher Decesaris | Trustee | 6 | $0 | $0 | $0 | $0 |
| Dominique Thomas | Trustee | 6 | $0 | $0 | $0 | $0 |
| Erin Furr-Stimming Md | Trustee | 6 | $0 | $0 | $0 | $0 |
| Jeff Carroll | Trustee |
Amber Southwell Phd
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Beth Hoffman
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Christopher Decesaris
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
| $12.2M |
| $12.1M |
| $7.9M |
| $15.8M |
| $13.9M |
| 2020 | $8.6M | $8.5M | $8.2M | $12.2M | $9.7M |
| 2019 | $11M | $10.9M | $9.2M | $11M | $9.4M |
| 2018 | $10.2M | $10.1M | $8.7M | $9.4M | $7.5M |
| 2017 | $10.3M | $10.2M | $8.6M | $8.1M | $6.1M |
| 2016 | $8.6M | $8.6M | $8M | $6.1M | $4.6M |
| 2015 | $8.5M | $8.5M | $7M | $5.2M | $4.1M |
| 2014 | $7.7M | $7.7M | $6.6M | $4.2M | $2.7M |
| 2013 | $7.2M | $7.2M | $6.8M | $3.5M | $1.6M |
| 2012 | $6.4M | $6.4M | $5.7M | $2.7M | $1.2M |
| 2011 | $6.1M | $6M | $6M | $2.7M | $1.1M |
| 2021 | 990 | DataIRS e-File |
| 2020 | 990 | Data | PDF not yet published by IRS |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| 2000 | 990 | — |
| $164.6K |
| Deborah Boyd | Regional Development Director | 35 | $120.1K | $0 | $22.6K | $142.7K |
| Jessica Marsolek | Assistant Director, Mission Programs | 35 | $111.8K | $0 | $19.7K | $131.5K |
| Nichole Mendoza | Regional Development Officer Pacific West | 35 | $102.6K | $0 | $21.5K | $124.2K |
Deborah Boyd
Regional Development Director
$142.7K
Hrs/Wk
35
Compensation
$120.1K
Related Orgs
$0
Other
$22.6K
Jessica Marsolek
Assistant Director, Mission Programs
$131.5K
Hrs/Wk
35
Compensation
$111.8K
Related Orgs
$0
Other
$19.7K
Nichole Mendoza
Regional Development Officer Pacific West
$124.2K
Hrs/Wk
35
Compensation
$102.6K
Related Orgs
$0
Other
$21.5K
| 6 |
| $0 |
| $0 |
| $0 |
| $0 |
| Jeffrey Brown | Trustee | 6 | $0 | $0 | $0 | $0 |
| Jonathan Klein Esq | Trustee | 6 | $0 | $0 | $0 | $0 |
| Kamran Alam | Trustee | 6 | $0 | $0 | $0 | $0 |
| Kelsey Porter | Trustee (thru 6/2024) | 6 | $0 | $0 | $0 | $0 |
| Leslie M Thompson Phd | Trustee | 6 | $0 | $0 | $0 | $0 |
| Mark Coe | Trustee | 6 | $0 | $0 | $0 | $0 |
| Vicki Wheelock Md | Trustee | 6 | $0 | $0 | $0 | $0 |
Dominique Thomas
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Erin Furr-Stimming Md
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Jeff Carroll
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Jeffrey Brown
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Jonathan Klein Esq
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Kamran Alam
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Kelsey Porter
Trustee (thru 6/2024)
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Leslie M Thompson Phd
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Mark Coe
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Vicki Wheelock Md
Trustee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0