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GLOBAL GENES STRIVES TO CONNECT, EMPOWER AND INSPIRE THE RARE DISEASE COMMUNITY.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$7.1M
Program Spending
79%
of total expenses go to program services
Total Contributions
$5.7M
Total Expenses
▼$7.4M
Total Assets
$1.5M
Total Liabilities
▼$1.4M
Net Assets
$187.4K
Officer Compensation
→$711.3K
Other Salaries
$2.8M
Investment Income
$9,473
Fundraising
▼N/A
Tax Year 2024 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $60.8K
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
LHON COLLECTIVE88-2257719 | SAN DIEGO, CA | $9,000 | Cash | MENTAL HEALTH IMPACT GRANT |
| FAIRVIEW HEIGHTS, IL | $9,000 | Cash | MENTAL HEALTH IMPACT GRANT | |
OXALOSIS & HYPEROXALURIA FOUNDATION91-1457505 | NEW PALTZ, NY | $9,000 | Cash | MENTAL HEALTH IMPACT GRANT |
PEDIATRIC BRAIN TUMOR FOUNDATION58-1966822 | WINSTON SALEM, NC | $9,000 | Cash | MENTAL HEALTH IMPACT GRANT |
THE ALLO HOPE FOUNDATION84-2785519 | TUSCALOOSA, AL | $9,000 | Cash | MENTAL HEALTH IMPACT GRANT |
THE SUMAIRA FOUNDATION47-2398246 | SOMERVILLE, MA | $9,000 | Cash | MENTAL HEALTH IMPACT GRANT |
CURE JM FOUNDATION35-2222262 | LEESBURG, VA | $6,750 | Cash | MENTAL HEALTH IMPACT GRANT |
| Total | $60.8K | |||
LHON COLLECTIVE
SAN DIEGO, CA
$9,000
FAIRVIEW HEIGHTS, IL
$9,000
NEW PALTZ, NY
$9,000
WINSTON SALEM, NC
$9,000
THE ALLO HOPE FOUNDATION
TUSCALOOSA, AL
$9,000
SOMERVILLE, MA
$9,000
LEESBURG, VA
$6,750
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: PC
990-N (e-Postcard) Filing History
This organization files simplified Form 990-N (annual gross receipts ≤ $50,000).
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2024IRS e-File | $7.1M | $5.7M | $7.4M | $1.5M | $187.4K |
| 2023IRS e-File | $8.5M | $6.4M | $8.6M | $2.1M | $457.7K |
| 2022 | $5.6M | $3.9M | $7.7M | $2.3M | $541.3K |
| 2021 | $5.9M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
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 |
|---|
| Charlene Son Rigby | CEO | 40 | $319.1K | $0 | $836 | $320K |
| Nicole R Boice | Founder & Chief Mission Officer | 40 | $254.4K | $0 | $86 | $254.5K |
| Victoria Weiss | Senior Director, Finance | 24 | $136.8K | $0 | $86 | $136.9K |
| Christina Hartman | Secretary | 1 | $0 | $0 | $0 | $0 |
| Simon Frost | CFO | 1 | $0 | $0 | $0 | $0 |
| Katherine Maynard | Vice Chair | 1 | $0 | $0 | $0 | $0 |
| Walt Kowtoniuk | Chair | 1 | $0 | $0 | $0 | $0 |
Charlene Son Rigby
CEO
$320K
Hrs/Wk
40
Compensation
$319.1K
Related Orgs
$0
Other
$836
Nicole R Boice
Founder & Chief Mission Officer
$254.5K
Hrs/Wk
40
Compensation
$254.4K
Related Orgs
$0
Other
$86
Victoria Weiss
Senior Director, Finance
$136.9K
Hrs/Wk
24
Compensation
$136.8K
Related Orgs
$0
Other
$86
Christina Hartman
Secretary
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Simon Frost
CFO
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Katherine Maynard
Vice Chair
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Walt Kowtoniuk
Chair
$0
Hrs/Wk
1
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 |
|---|---|---|---|---|---|---|
| Karmen Trzupek | Senior Director, Scientific Programs | 40 | $179.3K | $0 | $6,386 | $185.7K |
| Zohreh Talebizadeh | Senior Director, Rare-x Research Program | 40 | $180K | $0 | $86 | $180.1K |
| Lauren Alford | Senior Director, Marketing | 40 | $168.5K |
Karmen Trzupek
Senior Director, Scientific Programs
$185.7K
Hrs/Wk
40
Compensation
$179.3K
Related Orgs
$0
Other
$6,386
Zohreh Talebizadeh
Senior Director, Rare-x Research Program
$180.1K
Hrs/Wk
40
Compensation
$180K
Related Orgs
$0
Other
$86
Lauren Alford
Senior Director, Marketing
$168.6K
Hrs/Wk
40
Compensation
$168.5K
Related Orgs
$0
Other
$86
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Alvin Shih | Director | 1 | $0 | $0 | $0 | $0 |
| Betsy Bogard | Director | 1 | $0 | $0 | $0 | $0 |
| Caroline Loewy | Director | 1 | $0 | $0 | $0 | $0 |
| David Pearce | Director | 1 | $0 | $0 | $0 | $0 |
| Hugh Hempel | Director | 1 | $0 | $0 | $0 | $0 |
| Ilana Fogelman | Director | 1 |
Alvin Shih
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Betsy Bogard
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Caroline Loewy
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
| $4.2M |
| $5.6M |
| $3.3M |
| $2.4M |
| 2020 | $5.6M | $3.9M | $5.2M | $3.1M | $2M |
| 2019 | $7M | $5.3M | $6.5M | $2.9M | $1.6M |
| 2018 | $4.9M | $5M | $4.5M | $1.7M | $1.4M |
| 2017 | $3.8M | $3.5M | $4M | $1.2M | $961.4K |
| 2016 | $3.6M | $3.1M | $3.4M | $1.2M | $1.1M |
| 2015 | $3.4M | $2.7M | $3.1M | $1M | $900K |
| 2014 | $2.1M | $2.1M | $1.8M | $744.4K | $666.3K |
| 2013 | $1.2M | $1.2M | $1.1M | $406.5K | $357.4K |
| 2012 | $733.5K | $665.3K | $573.5K | $195.4K | $187.9K |
| 2011 | $273.2K | $273.2K | $243.7K | $27.9K | $27.9K |
| 2021 | 990 | Data |
| 2020 | 990 | Data |
| 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 | — |
| $0 |
| $86 |
| $168.6K |
| Chwenwoan Kuan | Director, Program Operations | 40 | $146.3K | $0 | $6,062 | $152.3K |
| Timothy Ehrhard | Senior Director, It (term 12/24) | 40 | $151.7K | $0 | $86 | $151.8K |
Chwenwoan Kuan
Director, Program Operations
$152.3K
Hrs/Wk
40
Compensation
$146.3K
Related Orgs
$0
Other
$6,062
Timothy Ehrhard
Senior Director, It (term 12/24)
$151.8K
Hrs/Wk
40
Compensation
$151.7K
Related Orgs
$0
Other
$86
| $0 |
| $0 |
| $0 |
| $0 |
| Indu Navar | Director | 1 | $0 | $0 | $0 | $0 |
| John Reynders | Director | 1 | $0 | $0 | $0 | $0 |
| Kelly Mcvearry | Director | 1 | $0 | $0 | $0 | $0 |
| Khrystal Davis | Director | 1 | $0 | $0 | $0 | $0 |
| Morrie Ruffin | Director | 1 | $0 | $0 | $0 | $0 |
| Neil Kumar | Director | 1 | $0 | $0 | $0 | $0 |
| Peter Goodhand | Director | 1 | $0 | $0 | $0 | $0 |
| Ram Iyer | Director | 1 | $0 | $0 | $0 | $0 |
David Pearce
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Hugh Hempel
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Ilana Fogelman
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Indu Navar
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
John Reynders
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Kelly Mcvearry
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Khrystal Davis
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Morrie Ruffin
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Neil Kumar
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Peter Goodhand
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Ram Iyer
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0