Rett Syndrome Research Trust Inc

Organization Overview

Rett Syndrome Research Trust Inc is located in Trumbull, CT. The organization was established in 2008. According to its NTEE Classification (E12) the organization is classified as: Fund Raising & Fund Distribution, under the broad grouping of Health Care and related organizations. As of 12/2021, Rett Syndrome Research Trust Inc employed 8 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Rett Syndrome Research Trust Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, Rett Syndrome Research Trust Inc generated $8.1m in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 4.4% each year. All expenses for the organization totaled $4.7m during the year ending 12/2021. You can explore the organizations financials more deeply in the financial statements section below.

Since 2015, Rett Syndrome Research Trust Inc has awarded 178 individual grants totaling $41,589,943. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

THE ORGANIZATION'S MISSION IS FOCUSED ON THE DEVELOPMENT OF TREATMENTS AND CURES FOR RETT SYNDROME AND RELATED MECP2 DISORDERS.

Describe the Organization's Program Activity:

Part 3 - Line 4a

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


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.


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Board, Officers & Key Employees

Name (title)Compensation
Monica Coenraads
Chief Executive Officer
$220,000
Heidi Epstein
Vice Chairman
$0
Marci Valner
Treasurer
$0
Lawrence Mattis
Secretary
$0
Rachael Stevenson
Trustee
$0
Stephanie Bohn
Trustee
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$0
Related organizations$0
Government grants $155,395
All other contributions, gifts, grants, and similar amounts not included above$7,826,025
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$7,981,420
Total Program Service Revenue$115,073
Investment income $29,868
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales -$1,550
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $8,124,811

Grants Awarded

Over the last fiscal year, Rett Syndrome Research Trust Inc has awarded $4,584,810 in support to 24 organizations.

Grant RecipientAmount

UNIVERSITY OF MASSASHUSSETS MEDICAL SCHOOL

Org PageRecipient Profile

Amherst, MA

PURPOSE: RNA/DNA EDITING;READTHROUGH THERAPY; MECP2 DUPLICATION SYNDROME

$641,740

BEAM THERAPEUTICS

PURPOSE: DNA EDITING

$639,300

MASSACHUSETTS INSTITUTE OF TECHNOLOGY

Org PageRecipient Profile

Cambridge, MA

PURPOSE: RNA EDITING

$612,334

UNIVERSITY OF PENNSYLVANIA

PURPOSE: RETT RESEARCH

$380,686

UNIVERSITY OF MASSASHUSSETS MEDICAL SCHOOL

Org PageRecipient Profile

Amherst, MA

PURPOSE: RETT RESEARCH

$218,311

HOSPITAL FOR SICK CHILDREN

PURPOSE: GENOME EDITING FOR MECP2 DUPLICATION SYNDROME

$190,000
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 1 grants that Rett Syndrome Research Trust Inc has recieved totaling $250.

Awarding OrganizationAmount
Kittenbrink Family Foundation

Pittsburgh, PA

PURPOSE: GENERAL CHARITABLE GIVING

$250
View Grant Recipient Profile

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