NonprofitsRett Syndrome Research Trust Inc

Health Care

Rett Syndrome Research Trust Inc

TRUMBULL, CT

Total revenue

$9.3M

Total expenses

$11.7M

Net assets

$4.7M

Grants received

$8.6M

405 grants

EIN

260687439

Tax year

2024

Mission

The organization's mission is focused on the development of treatments and cures for rett syndrome and related mecp2 disorders.

Programs

3 programs

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: $37K

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.

Financials

FY 2024

Revenue

Contributions & grants$8.7M
Program service revenue$179K
Investment income$450K
Other revenue
Total revenue$9.3M

Expenses

Grants paid$9.4M
Salaries & benefits$1.2M
Fundraising$712K
Other expenses$1.2M
Total expenses$11.7M
Total assets$20.4M
Net assets$4.7M

People

16 listed

NameRoleCompensation

MONICA COENRAADS

CHIEF EXECUTIVE OFFICER

Board

$220K

50 hrs/wk

HEIDI EPSTEIN

VICE CHAIRMAN

Board

2 hrs/wk

INGRID HARDING

CO-FOUNDER AND TRUSTEE

Board

2 hrs/wk

LAWRENCE MATTIS

SECRETARY

Board

2 hrs/wk

AMY GILLIAND

TRUSTEE

Board

2 hrs/wk

ADRIAN BIRD

TRUSTEE

Board

2 hrs/wk

RACHAEL STEVENSON

TRUSTEE

Board

2 hrs/wk

RACHEL ROTHSCHILD

TRUSTEE

Board

2 hrs/wk

STEPHANIE BOHN

TRUSTEE

Board

2 hrs/wk

MARCI VALNER

TREASURER

Board

2 hrs/wk

ALBA TULL

TRUSTEE

Board

2 hrs/wk

BRAD ZELINGER

TRUSTEE

Board

2 hrs/wk

BRIAN WHITMER

TRUSTEE

Board

2 hrs/wk

TIMOTHY J FREEMAN

CHIEF DEVELOPMENT OFFICER

Staff

$220K

50 hrs/wk

JANA SE VON HEHN

CHIEF SCIENTIFIC OFFICER

Staff

$220K

50 hrs/wk

ROBERT DEANS

CHIEF TECHNOLOGY OFFICER

Staff

$215K

50 hrs/wk

Independent contractors

EDRAIN COLINA

MARKETING

$154K

Grants received

Showing 200 of 405

FromAmountPurposeYear
$64K
GENERAL SUPPORT
2024
$35K
RETT SYNDROME RESEARCH
2024
$35K
UNRESTRICTED GENERAL SUPPORT
2024
$11K
GENERAL SUPPORT
2024
$11K
TO FURTHER THE ORGANIZATION'S CHARITABLE PURPOSE
2024
$11K
MEDICAL / PUBLIC SERVICES
2024
$10K
GRANT DISTRIBUTION
2024
$10K
GENERAL FUND
2024
$10K
GENERAL OPERATING SUPPORT
2024
$10K
IN SUPPORT OF GENERAL OPERATIONS
2024
$7K
DISEASE/DISORDER
2024
$6K
GENERAL SUPPORT
2024
$6K
FOR RECIPIENT'S EXEMPT PURPOSE
2024
$6K
GENERAL SUPPORT
2024
$5K
UNRESTRICTED GENERAL SUPPORT
2024
$3K
MEDICAL RESEARCH
2024
$3K
2024 HOPE SPONSOR
2024
$3K
UNRESTRICTED
2024
$2K
GENERAL FUND
2024
$2K
VOLUNTEER INCENTIVE PROGRAM
2024
$1K
SUPPORT GENERAL OPERATIONS
2024
$1K
GENERAL PURPOSE
2024
$1K
GENERAL OPERATING PURPOSE
2024
$1K
Research
2024
$1K
UNRESTRICTED USE
2024
$1K
WORKING TO CURE RETT SYNDROME.
2024
$1K
GENERAL SUPPORT
2024
$1K
UNRESTRICTED
2024
$1K
UNRESTRICTED GENERAL
2024
$900
Charitable & Educational
2024
$500
GENEREAL FUNDING
2024
$500
MATCHING CONTRIBUTION (GENERAL OPERATING SUPPORT)
2024
$500
REVERSE RETT FALL FESTIVAL-"PROGRESS" LEVEL DONATION
2024
$300
MATCHING GIFTS
2024
$250
GENERAL CHARITABLE GIVING
2024
$8
GENERAL SUPPORT
2024
rett syndrom research
2024
$750K
RETT SYNDROME RESEARCH
2023
$285K
For grant recipient's exempt purposes
2023
$200K
Rett Syndrome research for a cure
2023
$50K
GENERAL CORPORATE PURPOSE
2023
$27K
MEDICAL/SCIENTIFIC RESEARCH & PROGRAMS
2023
$25K
CHARITABLE CONTRIBUTION
2023
$25K
PROGRAM SUPPORT
2023
$21K
FOR RECIPIENT'S EXEMPT PURPOSE
2023
$20K
GENERAL OPERATING SUPPORT
2023
$14K
FOR RECIPIENT'S EXEMPT PURPOSE
2023
$10K
MEDICAL RESEARCH
2023
$10K
GENERAL OPERATING SUPPORT
2023
$10K
PUBLIC CHARITY SUPPORT
2023
$10K
CHARITABLE CONTRIBUTION
2023
$10K
MEDICAL TREATMENT AND RESEARCH
2023
$10K
RESEARCH FOR RETT SYNDROME
2023
$10K
MEDICAL RESEARCH
2023
$10K
GENERAL FUND
2023
$10K
Charitable Event
2023
$7K
DISEASE/DISORDER
2023
$6K
GENERAL SUPPORT
2023
$6K
GENERAL SUPPORT
2023
$6K
CHARITABLE DONATION
2023
$6K
GENERAL FUND
2023
$5K
UNRESTRICTED CHARITABLE GIFT
2023
$5K
GENERAL SUPPORT FOR RETT SYNDROME RESEARCH TRUST WHOSE MISSION IS TO TRANSFORM THE LIVES OF ALL THOSE AFFECTED BY RETT SYNDROME BY ACCELERATING RESEARCH TOWARD TREATMENT AND A CURE WHILE EMPOWERING FAMILIES WITH THE INFORMATION, PROGRAMS, AND SERVICES THEY NEED TO THRIVE.
2023
$5K
CHARITABLE PURPOSES OF THE ORGANIZATION
2023
$5K
General
2023
$5K
PROGRAM SERVICES
2023
$5K
GENERAL CHARITABLE PURPOSES
2023
$5K
TO SUPPORT RESEARCH TRUST FUND.
2023
$5K
General & Unrestricted
2023
$5K
UNRESTRICTED
2023
$3K
GENERAL SUPPORT
2023
$3K
GENERAL OPERATIONS
2023
$2K
rett syndrom research
2023
$1K
TO FURTHER GOALS OF THE CHARITABLE ORGANIZATION
2023
$1K
GENERAL PURPOSE
2023
$1K
THE PURPOSE OF THIS GRANT IS TO SUPPORT RESEARCH FOR RETT SYNDROME
2023
$1K
Unrestricted for Donees discretionary application
2023
$1K
UNRESTRICTED
2023
$1K
Research
2023
$750
FOR GENERAL OPERATING SUPPORT
2023
$500
GENERAL FUNDING
2023
$500
GENERAL CHARITABLE GIVING
2023
$500
SUPPORT OF ORGANIZATION'S MISSION
2023
$500
GENERAL OPERATIONS
2023
$500
General & Unrestricted
2023
$500
UNRESTRICTED GENERAL
2023
$492
SUPPORT GENERAL OPERATIONS
2023
$480
GENERAL SUPPORT
2023
$250
REVERSE RETT LA
2023
$250
Charitable & Educational
2023
$100
GENERAL OPERATING SUPPORT
2023
$100
HEALTH AND HUMAN SERVICES
2023
$100
GENERAL OPERATING
2023
$75
HEALTH CHARITY
2023
$50
GENERAL SUPPORT
2023
$42
GENERAL SUPPORT
2023
$25
GENERAL SUPPORT
2023
$25
GENERAL SUPPORT
2023
$8
GENERAL SUPPORT
2023
$210K
RETT SYNDROME RESEARCH
2022
$177K
For grant recipient's exempt purposes
2022
$110K
GENERAL SUPPORT
2022
$70K
GENERAL SUPPORT
2022
$50K
GENERAL CORPORATE PURPOSE
2022
$30K
SUPPORT AND STIMULATE NEW RESEARCH STRATEGIES
2022
$25K
PROGRAM SUPPORT
2022
$25K
CURATIVE GENETIC RESEARCH
2022
$21K
HEALTH & HUMAN SERVICES
2022
$19K
FOR RECIPIENT'S EXEMPT PURPOSE
2022
$17K
MEDICAL/SCIENTIFIC RESEARCH & PROGRAMS
2022
$11K
RESEARCH FOR RETT SYNDROME
2022
$10K
UNRESTRICTED
2022
$10K
MEDICAL TREATMENT AND RESEARCH
2022
$10K
UNRESTRICTED GENERAL SUPPORT
2022
$10K
UNRESTRICTED GENERAL SUPPORT
2022
$10K
GENERAL OPERATING
2022
$10K
UNRESTRICTED
2022
$10K
GENERAL FUND
2022
$10K
CHARITABLE CONTRIBUTION
2022
$7K
CHARITABLE DONATION
2022
$6K
GENERAL SUPPORT
2022
$6K
GENERAL SUPPORT
2022
$6K
UNRESTRICTED
2022
$5K
GENERAL SUPPORT
2022
$5K
TO SUPPORT RESEARCH TRUST FUND.
2022
$5K
GENERAL RESEARCH
2022
$5K
General
2022
$5K
CHARITABLE PURPOSES OF THE ORGANIZATION
2022
$5K
Matching Gifts
2022
$3K
GENERAL SUPPORT
2022
$3K
UNRESTRICTED FUNDS
2022
$3K
GENERAL OPERATIONS
2022
$3K
PUBLIC SUPPORT OF ORGANIZATION MISSION
2022
$3K
GENERAL OPERATING PURPOSES
2022
$3K
MATCHING GIFT TO HEALTH & HUMAN SERVICES AGENCY
2022
$2K
UNRESTRICTED GRANT TO FURTHER THE DONEE'S EXEMPT PURPOSE.
2022
$2K
CHARITABLE
2022
$2K
PROGRAM/OPERATING SUPPORT
2022
$2K
FOR GENERAL OPERATING SUPPORT
2022
$1K
Unrestricted for Donees discretionary application
2022
$1K
GENERAL SUPPORT
2022
$1K
GENERAL OPERATING SUPPORT
2022
$1K
TO SPUR AND SUPPORT RESEARCH FOR RETT SYNDROME AND RELATED MECP2 DISORDERS
2022
$1K
Medical Research
2022
$1K
GENERAL FUND
2022
$1K
ACHIEVING A CURE FOR RETT SYNDROME AND RELATED DISORDERS CAUSED BY DEFECTS IN THE MECP2 GENE.
2022
$875
GENERAL PURPOSE
2022
$500
MATCHING GIFT
2022
$500
CHARITABLE
2022
$500
SUPPORT GENERAL OPERATIONS
2022
$500
Research
2022
$500
PUBLIC CHARITY
2022
$500
SUPPORT OF ORGANIZATION'S MISSION
2022
$500
GENERAL OPERATIONS
2022
$500
General & Unrestricted
2022
$350
HEALTH AND HUMAN SERVICES
2022
$250
REVERSE RETT LA
2022

Funded by

$8.6M from 171 funders · 405 grants · 2017–2024

Fidelity Investments Charitable Gift Fund

$1.5M · 8 grants · 2017–2023

Tull Family Foundation

$1.2M · 3 grants · 2020–2023

Donor Advised Charitable Giving Inc

$753K · 7 grants · 2017–2023

American Online Giving Foundation Inc

$725K · 6 grants · 2019–2024

National Philanthropic Trust

$608K · 6 grants · 2017–2023

Girl Power 2 Cure

$485K · 5 grants · 2017–2024

The Randall Family Foundation

$360K · 3 grants · 2019–2022

Crush Rett Syndrome

$200K · 1 grant · 2023

Details

EIN260687439
NTEE codeE12
Subsection03
Ruling date2008-02
Formed2007
Employees8
Volunteers0
RETT SYNDROME RESEARCH TRUST INC — Mission, Financials & Grants Received | Grantivo