Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Oct 2018.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
88 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
8 people listed on the 990; $100K paid to officers and key staff.
Amber Freed’s $100K as Founder/CEO is at the 69th percentile of top reported officer pay among 328 $100K–1M medical research nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 1 named individual · Part VII
| Name | FY2024 | FY2023 |
|---|---|---|
| Amber Freed | $99,999 | $99,999 |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2Yes
- Top official's pay set by an independent reviewPt VI · Ln 15aNo
- Loans to or from officersSch L · Pt II2 listed
Programs and updates
Advocates for children and families affected by the SLC6A1 mutation, funding research for a cure.
Questions for Slc6a1 Connect
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SLC6A1 connect supports targeted research and provides funding to research institutions to quickly advance the development of treatments and ultimately a cure for SLC6A1.
SLC6A1 connect carried out an international scientific symposium and family conference in december 2024. The international scientific symposium includes a full day of clinical updates, scientific presentations and protocols, the latest research, family testimonials and an engaging panel discussion on clinical trial readiness.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $124K | $273K |
| InvestmentsLn 11–13 | $2.2M | $2.1M |
| Total assetsLn 16 | $2.3M | $2.4M |
| LiabilitiesLn 26 | $218K | $274K |
| Net assetsLn 32 | $2.1M | $2.1M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $266K | $266K | ||
| Pay of current officers, directors and key staffLn 5 | $100K | $100K | ||
| Payroll taxesLn 10 | $8K | $8K | ||
| Accounting feesLn 11c | $8K | $8K | ||
| Investment management feesLn 11f | $4K | $4K | ||
| Advertising and promotionLn 12 | $4K | $4K | ||
| Office expensesLn 13 | $12K | $1K | $8K | $4K |
| Information technologyLn 14 | $7K | $4K | $3K | |
| TravelLn 17 | $12K | $12K | ||
| Conferences, conventions and meetingsLn 19 | $152K | $152K | ||
| InsuranceLn 23 | $2K | $2K | ||
| Other expenses (24a–d)Ln 24 | $104K | $73K | $31K | |
| Total functional expensesLn 25 | $680K | $600K | $26K | $54K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $717K | $680K | $37K | $2.1M | 990 PDF |
| FY2023 | $677K | $1.3M | −$588K | $2.1M | 990 PDF |
| FY2022 | $945K | $957K | −$12K | $2.7M | 990 PDF |
| FY2021 | $984K | $483K | $501K | $2.7M | 990 PDF |
| FY2020 | $801K | $714K | $87K | $2.2M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $716,694 revenue, 12 lines filed
Part VI · Governance 7 of 8 board members independent, 5 to look at
Part VIII · Statement of revenue $716,694 across 6 lines filed
Part IX · Statement of functional expenses $679,506 across 12 lines filed
Part X · Balance sheet $2,404,524 assets, 10 lines filed
Part XI · Reconciliation of net assets $2,130,432 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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