- Revenue 2025
- $221,722
- Expenses 2025
- $253,805
Program services were 99.6% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- Classification
- 1800
- Street
- 548 MARKET ST PMB 38841
These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).
Mission and programs · 2025
Mission
To invest in scientific and translational research of personalized genetic treatments for children impacted by severe genetic disease.
Activities or mission (Part I)
Our mission is to bring an end to the long tail of genetic disease
-
CONTINUED A DRUG DISCOVERY PROGRAM FOR A NOVEL ALLELE SELECTIVE ANTISENSE OLIGONUCLEOTIDE MOLECULE TO KNOCKDOWN THE MUTANT KCNQ2 CAUSING DEVELOPMENT AND EPILEPTIC ENCEPHALOPATHY.
Expenses $252,895
As filed on the 2025 return.
Officers and directors · 2025
As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.
-
Rohan SethROHAN SETH
President
- Total calculated
- $0
- Hours/week
- 40
-
Corey LongCOREY LONG
Board Member
- Total calculated
- $0
- Hours/week
- 0.5
-
Cinnamon ChuCINNAMON CHU
Treasurer
- Total calculated
- $0
- Hours/week
- 1
-
Amber BahlAMBER BAHL
Board Member
- Total calculated
- $0
- Hours/week
- 0.5
-
Rohan DangROHAN DANG
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. Earlier years are each on their own filing page.
Filings
-
2025
- Revenue
- $221,722
- Expenses
- $253,805
- Contributions
- $29,379
- Grants paid
- $135,421
-
2024
- Revenue
- $263,800
- Expenses
- $287,759
- Contributions
- $21,876
- Grants paid
- $137,339
-
2023
- Revenue
- $257,301
- Expenses
- $201,376
- Contributions
- $26,259
- Grants paid
- $44,400
-
2022
- Revenue
- $51,338
- Expenses
- $556,423
- Contributions
- $18,723
- Grants paid
- $501,171
The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.
Other returns filed
-
2021 · 990
- Revenue
- $4,972,562
- Expenses
- $1,813,259
- Assets (EOY)
- $5,246,581
-
2020 · 990
- Revenue
- $412,370
- Expenses
- $312,524
- Assets (EOY)
- $2,087,278
-
2019 · 990
- Revenue
- $2,141,959
- Expenses
- $154,527
- Assets (EOY)
- $1,987,432
-
2019 · 990
- Revenue
- $2,141,959
- Expenses
- $154,527
- Assets (EOY)
- $1,987,432
Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.
Grants made
-
2022 ASO RESEARCH
-
$134,839
2024 ASO RESEARCH
-
$100,000
2025 Advanced ASO Research
-
$44,400
2023 ASO RESEARCH
-
$14,104
2025 DNA Research
-
$14,000
2025 Nuero Devel Gene Research
-
$6,062
2025 Genetic Research
-
$2,500
2024 Special Needs fam support
-
$650
2025 KCNQ Research
Grants received
-
2023 GENERAL SUPPORT
-
2025 GENERAL SUPPORT
Other IRS files
Auto-Revocation List
Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.
Publication 78
Listed as of 13 October 2026, under deductibility PC.
These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.
What this page reflects
The registration facts above come from the IRS Business Master File published 13 October 2026 and read 1 November 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.