Form 990 for tax year 2023

Totals

Total revenue

$8,523,815

Total expenses

$12,338,304

Contributions and grants received

$8,080,684

Grants paid

$9,938,988

Program service revenue

$106,950

Investment income

$336,181

Other revenue

$0

Total assets, end of year

$18,457,084

Total liabilities, end of year

$11,321,272

Net assets or fund balances, end of year

$7,135,812

Program services expenses (Part IX)

$11,396,540

Management and general expenses

$192,149

Fundraising expenses

$749,615

Program service expenses (Part III)

$11,396,540

Program services were 92.4% 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.

Mission and programs · 2023

• THE ORGANIZATION PROVIDES FUNDING TO LEADING RESEARCH INSTITUTIONS AND COMPANIES WORKING ON RETT SYNDROME AND RELATED MECP2 DISORDERS.

  Expenses $11,144,171 · Grants $9,938,988 · Revenue $106,950

• THE ORGANIZATION SPONSORS SCIENTIFIC WORKSHOPS THAT BRING THE LEADING RETT RESEARCHERS TOGETHER WITH ELITE SCIENTISTS IN SYNERGISTIC FIELDS TO EXCHANGE DATA AND SET RESEARCH DIRECTION.

  Expenses $252,369

• THE ORGANIZATION PROVIDES FUNDING TO LEADING RESEARCH INSTITUTIONS WORKING ON RETT SYNDROME AND RELATED MECP2 DISORDERS. RESEARCH IS AIMED AT 1) RESTORING LEVELS OF MECP2 PROTEIN, 2) IDENTIFYING OBJECTIVE TOOLS TO MEASURE RETT SYMPTOMS 3) ESTABLISH A CLINICAL TRIAL NETWORK 4) IDENTIFY FUNCTION OF MECP2 PROTEIN.

• THE ORGANIZATION SPONSORS SCIENTIFIC WORKSHOPS THAT BRING THE LEADING RETT RESEARCHERS TOGETHER WITH ELITE SCIENTISTS IN SYNERGISTIC FIELDS TO EXCHANGE DATA AND SET RESEARCH DIRECTION.

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

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. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• MASSACHUSETTS INSTITUTE OF TECHNOLOGY

  $3,734,738

  RNA EDITING

• UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL

  $2,343,091

  RETT RESEARCH

• EMORY UNIVERSITY

  $1,254,085

  RNA EDITING

• PROQR

  $1,120,000

  RETT RESEARCH

• CALIFORNIA INSTITUTE OF TECHNOLOGIES

  $500,000

  RETT RESEARCH

• UNIVERSITY OF CALIFORNIA DAVIS

  $390,506

  RNA EDITING

• CORIELL INSTITUTE FOR MEDICAL RESEARCH

  $105,826

  RETT RESEARCH

• HARVARD STEM CELL INSTITUTE

  $101,887

  RETT RESEARCH

• RETT SYNDROME GLOBAL REGISTRY CO RSRT

  $100,000

  RETT RESEARCH

• BOSTON CHILDREN'S HOSPITAL

  $69,088

  RETT RESEARCH

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type

form_990

Tax year

2023

Filed

25 June 2024

IRS schema version

2023v5.1

Source object

202431849349300208

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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