Totals
- Total revenue
- $1,888,508
- Total expenses
- $1,387,442
- Contributions and grants received
- $1,787,094
- Grants paid
- $491,099
- Program service revenue
- $19,288
- Investment income
- $53,281
- Other revenue
- $28,845
- Total assets, end of year
- $2,943,272
- Total liabilities, end of year
- $86,971
- Net assets or fund balances, end of year
- $2,856,301
- Program services expenses (Part IX)
- $1,180,179
- Management and general expenses
- $155,969
- Fundraising expenses
- $51,294
- Program service expenses (Part III)
- $1,180,179
Program services were 85.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1f · All other contributions, gifts and grants
$1,787,094
-
2a · Program service revenue: Registrations
total $19,288 · related or exempt $19,288
-
3 · Investment income
total $53,281 · excluded $53,281
-
8a · Fundraising events: gross income
$28,845
-
8c · Net income from fundraising events
total $28,845 · excluded $28,845
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $425,418 · program services $425,418
-
2 · Grants to domestic individuals
total $2,500 · program services $2,500
-
3 · Grants to foreign organizations and individuals
total $63,181 · program services $63,181
-
5 · Compensation of officers, directors and key employees
total $102,083 · program services $56,761 · management and general $30,143 · fundraising $15,179
-
7 · Other salaries and wages
total $127,025 · program services $70,629 · management and general $37,507 · fundraising $18,889
-
10 · Payroll taxes
total $19,575 · program services $10,884 · management and general $5,780 · fundraising $2,911
-
11b · Fees: legal
total $20,576 · program services $6,398 · management and general $13,716 · fundraising $462
-
11c · Fees: accounting
total $20,424 · program services $6,351 · management and general $13,615 · fundraising $458
-
11f · Fees: investment management
total $1,141 · management and general $1,141
-
11g · Fees: other
total $400,944 · program services $363,845 · management and general $35,891 · fundraising $1,208
-
12 · Advertising and promotion
total $5,215 · program services $4,324 · management and general $891
-
13 · Office expenses
total $8,212 · program services $2,327 · management and general $4,312 · fundraising $1,573
-
14 · Information technology
total $49,777 · program services $35,149 · management and general $4,348 · fundraising $10,280
-
17 · Travel
total $33,714 · program services $27,836 · management and general $5,544 · fundraising $334
-
19 · Conferences, conventions and meetings
total $97,962 · program services $97,962
-
23 · Insurance
total $1,294 · management and general $1,294
-
24a · Other expenses: Other
total $8,401 · program services $6,614 · management and general $1,787
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $573,374 · end of year $1,424,495
-
2 · Savings and temporary cash investments
beginning of year $874,742 · end of year $289,660
-
3 · Pledges and grants receivable
beginning of year $1,043,892 · end of year $1,229,117
-
17 · Accounts payable and accrued expenses
beginning of year $188,594 · end of year $71,422
-
18 · Grants payable
end of year $15,549
-
27 · Net assets without donor restrictions
beginning of year $1,303,414 · end of year $1,706,301
-
28 · Net assets with donor restrictions
beginning of year $1,000,000 · end of year $1,150,000
Mission and programs · 2024
Mission
To empower a unified community for chromosome 8p heroes for a meaningful life today while accelerating treatments for tomorrow. Activities include clinical care, research, AI data-driven platform and biorepository, and education and advocacy.
-
Scientific Programs: Project 8p Foundation partners with top researchers and biopharma to uncover the causes of chromosome 8p disorders and improve the lives of those affected. Our work addresses urgent biological questionssuch as symptom progression, mitochondrial dysfunction, gut-brain interactions, and cellular stressto deliver actionable clinical tools for families today, while accelerating discoveries that can lead to scalable treatments for all communities affected by complex neurodevelopmental and neuromuscular conditions. Were advancing innovative technologies and accelerating therapeutic discovery by harnessing data in new ways. Our proprietary 8p Insights Portal is a growing, patient-centered resource that integrates clinical records, caregiver-reported outcomes, and biospecimen datadriving scientific breakthroughs and delivering meaningful impact for those living with chromosome 8p disorders.
Expenses $927,478 · Grants $468,599
-
Community Outreach & Conferences: Project 8p supported over 200 families with clinical tools, education, and services. We hosted a three-day Family & Science Conference, bringing together researchers, clinicians, and families to foster collaboration and accelerate progress. Through monthly roundtables and ongoing stakeholder education, we promote a team science approach while sharing the latest research, clinical insights, and lived experiences. These efforts strengthen our shared goals and ensure the voices of those affected by 8p remain central to every initiative.
Expenses $218,505 · Grants $2,500 · Revenue $19,288
-
Patient Impact (Clinics & Care): Project 8p advanced its mission to improve clinical care for individuals with chromosome 8p disorders through several key initiatives. We published the first-ever Clinical Care Guidelines for 8p, providing an evidence-informed framework to guide physicians and care teams worldwide. We also launched the Patient Navigator, a free, interactive, online tool that helps families and clinicians understand symptoms across body systemsdrawing on real-world data from our 8p Insights Portal.Additionally, we expanded our Multidisciplinary Hospital Clinic Model, supporting the development of coordinated care hubs that bring together specialists to provide comprehensive, patient-centered services. These efforts mark important strides in reducing diagnostic delays, improving care coordination, and empowering families with accessible, data-driven resources.
Expenses $34,196 · Grants $20,000
As filed on the 2024 return.
Listed in Part VII
-
Lauren Chaby
Executive Director
- Total calculated
- $102,083
- From this org
- $102,083
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
-
Wissam Nesr
Director
- Total calculated
- $0
- Hours/week
- 1
-
David Jackson
Director
- Total calculated
- $0
- Hours/week
- 1
-
Jahn Marie Surette
Director
- Total calculated
- $0
- Hours/week
- 1
-
Bina Shah
FounderCEOTreasurer
- Total calculated
- $0
- Hours/week
- 5
-
Erica Seaborne
Secretary
- Total calculated
- $0
- Hours/week
- 1
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.
Grants on this return
-
The Regents of the Univ of Cal
$220,994
Research
-
University of Connecticut
$79,923
Research
-
$79,647
-
$49,641
Research
-
$20,000
Clinical Care
-
$10,000
Research
Provenance
- Return type
- form_990
- Tax year
- 2024
- Filed
- 5 November 2025
- IRS schema version
- 2024v5.2
- Source object
- 202523109349301402
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
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