Global Genes
Global Genes' mission is to drive change through the support of rare disease patients and families while equipping advocacy leaders with important tools, resources, mentoring, and connections to further advance awareness, education, and research.
Global Genes at a glance
In short: Global Genes gave $61K across 7 grants in 2024 (avg $9K), top state California. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $60,750
- -74.8% vs 2023
- Grants made (2024)
- 7
- -68.2% vs 2023
- Average grant
- $8,679
- -20.9% vs 2023
- Median grant
- $9,000
- Total assets
- $1,538,482
- -26.7% vs 2023
- Primary geography
- California (15% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
Who Global Genes funds
How this funder distributes its grants
Top Recipients
Top 7 recipients in 2024
The largest 2024 recipient was Lhon Collective ($9K). Together the top 7 received $61K.
Grant Size Distribution
101 grants across all recorded years
The most common grant size was under $50K: 100 grants of 101 (99%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 7 itemized grants.
States
Cities
How Global Genes gives
- Giving fell 76% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $61K (2024) to $450K (2020). In 2024 it made 7 grants totaling $61K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Lhon Collective San Diego, CA | Mental Health Impact Grant | $9,000 |
| National Foundation for Ectodermal Dysplasias Fairview Heights, IL | Mental Health Impact Grant | $9,000 |
| Oxalosis & Hyperoxaluria Foundation New Paltz, NY | Mental Health Impact Grant | $9,000 |
| Pediatric Brain Tumor Foundation Winston-Salem, NC | Mental Health Impact Grant | $9,000 |
| The Allo Hope Foundation Tuscaloosa, AL | Mental Health Impact Grant | $9,000 |
| The Sumaira Foundation Somerville, MA | Mental Health Impact Grant | $9,000 |
| Cure JM Foundation Leesburg, VA | Mental Health Impact Grant | $6,750 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $1,538,482 | $7,145,531 | $7,415,893 | $60,750 | 7 | $9,473 |
| 2023 | $2,099,140 | $8,469,402 | $8,561,859 | $241,252 | 22 | $3,487 |
| 2022 | $2,294,462 | $5,557,435 | $7,700,189 | $221,259 | 20 | $1,739 |
| 2021 | $3,315,841 | $5,883,997 | $5,557,417 | $251,155 | 18 | $-1,882 |
| 2020 | $3,087,118 | $5,567,077 | $5,166,425 | $450,000 | 34 | $11,307 |
About Global Genes
Based on IRS filings
Global Genes is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Washington, DC. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $1.5M in total assets. In 2024, it awarded 7 grants totaling $61K. Net investment income was $9K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Global Genes is led by Charlene Son Rigby, CEO on every filing since 2023; 8 of 26 officers listed in 2024 are compensated.
Officers on the 2024 filing
Charlene Son Rigby
CEO
On filings since 2023
40 hrs/week
$323K (2023) → $319K (2024)
Walt Kowtoniuk
Chair
On filings since 2023
1 hr/week
No compensation reported
Lauren Alford
Senior Director & Marketing
Senior Director & Marketing Communications → Senior Director & Marketing, 2024
On filings since 2022
40 hrs/week
$160K (2022) → $169K (2024)
Victoria Weiss
Senior Director & Finance
On filings since 2022
24 hrs/week
$24K (2022) → $137K (2024)
Karmen Trzupek
Senior Director & Scientific Programs
On filings since 2023
40 hrs/week
$162K (2023) → $179K (2024)
Timothy R. Ehrhard
Senior Director
On filings since 2023
40 hrs/week
$170K (2023) → $152K (2024)
Chwenwoan Kuan
Director & Program Operations
New on the 2024 filing
40 hrs/week
$146K (2024)
Zohreh Talebizadeh
Senior Director & Rare-X Research Program
New on the 2024 filing
40 hrs/week
$180K (2024)
Caroline Loewy
Director
Director → Treasurer, 2021
Treasurer → Director, 2023
On filings since 2020
1 hr/week
No compensation reported
Hugh Hempel
Director
On filings since 2020
1 hr/week
No compensation reported
Indu Navar
Director
On filings since 2020
1 hr/week
No compensation reported
Neil Kumar
Director
On filings since 2020
1 hr/week
No compensation reported
Alvin Shih
Director
On filings since 2023
1 hr/week
No compensation reported
Betsy Bogard
Director
On filings since 2023
1 hr/week
No compensation reported
David Pearce
Director
On filings since 2023
1 hr/week
No compensation reported
Ilana Fogelman
Director
On filings since 2023
1 hr/week
No compensation reported
John Reynders
Director
On filings since 2023
1 hr/week
No compensation reported
Khrystal Davis
Director
On filings since 2023
1 hr/week
No compensation reported
Morrie Ruffin
Director
On filings since 2023
1 hr/week
No compensation reported
Peter Goodhand
Director
On filings since 2023
1 hr/week
No compensation reported
Ram Iyer
Director
On filings since 2023
1 hr/week
No compensation reported
Kelly McVearry
Director
New on the 2024 filing
1 hr/week
No compensation reported
Nicole R. Boice
Founder & Chief Mission Officer
Founder → Founder & Chief Mission Officer, 2023
On filings since 2020
40 hrs/week
$159K (2020) → $254K (2024)
Christina M. Hartman
Secretary
Director → Secretary, 2022
On filings since 2020
1 hr/week
No compensation reported
Katherine Maynard
Vice Chair
On filings since 2023
1 hr/week
No compensation reported
Simon Frost
CFO
On filings since 2023
1 hr/week
No compensation reported
Former officers (17)
- Former: Maria Della Rocca (2022–2023) — Senior Director, Support & Education
- Former: Vanessa Vogel-Farley (2023) — Senior Director, Research Data Analytics & Governa
- Former: Craig Martin (2020–2022) — Interim CEO · Filing note: Term ended start 10/2025
- Former: John Crowley (2020–2022) — Director
- Former: Mary K. O'Connor (2020–2022) — Senior Director & Development
- Former: Peter Pellizzon (2020–2022) — Board Chairman
- Former: Christopher Nunes (2021–2022) — Finance Director
- Former: Shankar Ramkellawan (2022) — Manager, Data Science & Insights
- Former: Tim Ehrhard (2022) — Senior Director
- Former: Brad Margus (2020–2021) — Director
- Former: Katie Stevens (2020–2021) — Director
- Former: Melissa Strodtbeck (2020–2021) — Finance Director · Filing note: Term ended 12021
- Former: Pam Ferris (2020–2021) — Vice President Development & Marketing
- Former: Christain Rubio (2021) — Vice President Strategic Advancement
- Former: Christian Rubio (2020) — Vice President Strategic Advancement
- Former: Kimberly Haugstad (2020) — CEO · Filing note: Term ended end 10/2025
- Former: Susan Brisendine (2020) — Director Engagement Programs
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $319K, to Charlene Son Rigby (CEO). 8 officers or directors reported compensation on that filing.
Frequently asked questions about Global Genes
How much does Global Genes give each year?
Global Genes gave $61K across 7 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $241K across 22 grants.
What is Global Genes's typical grant size?
Global Genes's median grant in 2024 was $9,000, and its average grant was $8,679, across 7 grants on its 2024 IRS Form 990.
Where does Global Genes give grants?
Global Genes's top state is California, with 15% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were Illinois (15%) and New York (15%).
Does Global Genes give general operating support?
Not in 2024: none of the 7 grants with a stated purpose on Global Genes's 2024 IRS Form 990 were described as general or operating support. Recurring purposes include "Mental Health Impact Grant" (7 grants).
Who are Global Genes's largest grantees?
Global Genes's largest 2024 grantees include Lhon Collective ($9,000), National Foundation for Ectodermal Dysplasias ($9,000) and Oxalosis & Hyperoxaluria Foundation ($9,000), according to its 2024 IRS Form 990. Together they received 44% of its itemized 2024 grant dollars.
How large is Global Genes?
Global Genes reported $1.5M in total assets on its 2024 IRS Form 990. Its revenue that year was $7.1M.
What is Global Genes?
Global Genes is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Washington, DC. It holds $1.5M in total assets as of 2024.
What is Global Genes's EIN?
Global Genes's EIN (Employer Identification Number) is 26-3331487. IRS Form 990 filing data is available on this page for 2020–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS November 15, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 10, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 14, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS September 25, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS October 24, 2025)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
Browse active grant opportunities in Global Genes's focus areas in our free grants database
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Cite this profile
Grantable. (2026). Global Genes funder profile. GrantGraph. Retrieved October 12, 2026, from https://grantable.co/funders/global-genes-morg_420b0b4c0ff74d46af7cc5ba626626ed
BibTeX
@misc{grantable_263331487_2026,
author = {{Grantable}},
title = {{Global Genes funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/global-genes-morg_420b0b4c0ff74d46af7cc5ba626626ed},
note = {Accessed 2026-10-12. Data licensed CC BY 4.0}
}The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.
Figures come from Global Genes's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
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