PLATINUM2023

International Rett Syndrome Foundation

Accelerating Research. Empowering Families.

aka Rettsyndrome.org   |   Cincinnati, OH   |  www.rettsyndrome.org

Mission

International Rett Syndrome Foundation is committed to transforming the lives of all those affected by Rett syndrome through relentless pursuit of advanced and comprehensive research, delivering treatments and ultimately a cure for this disorder. In our pursuit of a cure, we never forget that Rett syndrome impacts the entire family. We empower our families with the tools they need while never taking our eye off the ultimate goal of curing Rett syndrome.

Ruling year info

2000

Chief Executive Officer

Ms. Melissa Kennedy

Main address

4600 Devitt Drive

Cincinnati, OH 45246 USA

Show more contact info

Formerly known as

International Rett Syndrome Association

EIN

31-1682518

NTEE code info

Alliance/Advocacy Organizations (G01)

Brain Disorders (G48)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

International Rett Syndrome Foundation exists to transform the lives of everyone affected by Rett syndrome. We accomplish this through the pursuit of advanced and comprehensive research to deliver treatments and ultimately a cure for this disorder. We also provide direct support services to empower the families impacted by Rett syndrome. With over 8000 people in the United States and thousands more across the globe living with Rett syndrome, the need has never been greater. As a rare disease, Rett syndrome was hardly understood just 25 years ago. Since that time, remarkable progress has been made. As the understanding of Rett syndrome increases at an unprecedented pace, the need to disseminate that information to the families who live every day with the effects of Rett syndrome is critical. We are the only Rett syndrome foundation with a bold commitment to empowering families so that they have the tools they need to make the best possible decisions for their child.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research Program

IRSF is a leading private funder of basic, translational, and clinical Rett syndrome research, funding over $58M in high-quality, peer-reviewed research grants and programs to date. IRSF is cultivating research programs that link basic, translational, and clinical research so that IRSF aggressively identifies emerging therapeutic targets and supports the most promising of these towards tangible treatments. Over the last decade, IRSF has supported a Postdoctoral Fellowship program drawing in young, bright, and talented scientists to the field of Rett research, ensuring a future with highly skilled researchers. Annually, IRSF hosts the worlds largest gathering of global Rett researchers and clinicians to establish research direction and priorities while exchanging ideas and the most recent information. It is because of IRSF funding that there is now an FDA approved treatment for Rett, known commercially in the U.S. as DAYBUE.

Population(s) Served
Children and youth
Adults

• A toll-free 1-800-818-RETT (7388) number for families to call to receive informational resources and emotional support
• The Rett Syndrome Handbook and Communication Guidelines - the most comprehensive resource guides with contributions from Rett experts around the globe
• Maintenance of a comprehensive patient database
• Public awareness and advocacy materials
• Electronic and printed newsletters
• Support for regional clinics and seminars on Rett syndrome
• Informational web site and social media forums for both professional and family-to-family support
• Professional referral services
• National network of knowledgeable and caring volunteer regional representatives and advisors

Population(s) Served
Families

IRSFs educational activities focus on providing information about and raising awareness of Rett syndrome. In 2023, IRSF launched a new web application for caregivers and families. The app, My Rett Ally allows caregivers to keep all their essential care regime records in one place. IRSFs digital programming is comprised of our RettED online webinar library, which is posted for free on IRSFs website, and our new parent tool kit, which is sent to our newly diagnosed community members. Our in-person programming includes activities such as regional RettEd Days hosted at our local Rett Center of Excellence clinics, our biennial ASCEND Rett Syndrome National Summit, and our RettAways which are accessible and affordable retreats for the Rett community hosted by the foundation.

Population(s) Served
Families
Caregivers

This program is designed to educate and support parents in their earliest days in the journey with Rett syndrome. Providing the most up to date educational materials and connections for social support are priorities of this program.

Population(s) Served
Parents
Families

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2010

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of grassroots fundraising events held.

This metric is no longer tracked.
Totals By Year
Related Program

Research Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Grassroots events are critical to make the world aware that Rett syndrome exists and to raise money for it's cure.

Number of New Parent Packets mailed.

This metric is no longer tracked.
Totals By Year
Related Program

Newly Diagnosed Family Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Newly Diagnosed families who register with us receive this packet filled with the latest information about Rett syndrome and the services we offer.

Number of new donors

This metric is no longer tracked.
Totals By Year
Related Program

Research Program

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Number of participants attending course/session/workshop

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families

Related Program

Educational Programming

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Participants in Educational programming - including webinars and live educational events

Number of countries represented by visitors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families

Related Program

Educational Programming

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of countries with participants in our Educational Programming

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Related Program

Research Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

International Rett Syndrome Foundation exists to transform the lives of everyone affected by Rett syndrome. We accomplish this through the pursuit of advanced and comprehensive research to deliver treatments and ultimately a cure for this disorder. We also provide direct support services to empower the families impacted by Rett syndrome. With over 8000 people in the United States and thousands more across the globe living with Rett syndrome, the need has never been greater. As a rare disease, Rett syndrome was hardly understood just 25 years ago. Since that time, remarkable progress has been made. As the understanding of Rett syndrome increases at an unprecedented pace, the need to disseminate that information to the families who live every day with the effects of Rett syndrome is critical. We are the only Rett syndrome foundation with a bold commitment to empowering families so that they have the tools they need to make the best possible decisions for their child.

International Rett Syndrome Foundation (IRSF) is the only organization dedicated to advancing Rett syndrome research and empowering the families living with Rett syndrome. We work toward our ultimate goal of creating a world without Rett syndrome. A world without Rett syndrome requires the delivery of treatments and a cure for this disorder. IRSF is building the foundation needed to bring these to our Rett syndrome community. Through our Center of Excellence (CoE) network of clinics, and thanks to leadership provided by our Medical Advisory Board, we work to ensure that a national network of Rett syndrome clinics is equipped and prepared to administer and advance clinical trials for Rett syndrome. We develop standardized practices for Rett syndrome patient care, sharing this information with all North American clinics, to improve patient access to excellent care. Additionally, clinical data collected through this network supplements an existing, and already robust, Natural History Study database stewarded by our Foundation. Our aim is continued data collection and the development of a rich Rett Clinical Disease Registry (RDCR), that will provide insight into the natural history of Rett syndrome and insight into effective patient care, while also providing critical information that will support the drug development process. While we focus on infrastructure and data, we never forget that Rett syndrome impacts and entire family. We understand that impact and our Family Empowerment (FE) Program provides our Rett syndrome families with the information, education, and services they need to thrive. Our FE Program ensures that our families are empowered to confidently participate in a clinical trial and that their perspective can be used to influence the development of patient-centric clinical trial protocols. Through our FE Program we provide clinicians, care providers, and families with accessible, reliable, easy to understand information regarding Rett syndrome. We make that information available to anyone across the globe.

As a leading private funder of Rett syndrome research, we have committed over $58M to research to date. We have over 40 Research Grant projects underway. Our Chief Science Officer along with our Scientific Advisory Board and Medical Advisory board are actively working to develop and implement strategies to guide us forward in research and patient care. We also have staff dedicated to meeting the needs of our families. Our small but dedicated staff is responsive and available to provide families with the tools they need to understand and live with Rett syndrome. Each year, hundreds of new parents join the International Rett Syndrome Foundation. Families from over 55 countries across the globe access and utilize the resources found on our website.

Twenty years ago, there was no known cause, treatment or hope for a cure for Rett syndrome. At the turn of the century, the gene associated with Rett syndrome was discovered and during this most recent decade, there has been an immense amount of progress in Rett syndrome research. We currently have multiple compounds in or preparing for clinical trials. As of March 2023, Rett syndrome received its first ever FDA-approved treatment. Our Scout program continues to evolve, screening an unprecedented number of compounds for potential use in Rett syndrome in faster and more cost efficient ways. Our 18 Centers of Excellence continue to drive research forward and deliver specialized clinical care to our families. We continue to develop new platforms for communicating with and empowering our families. From our New Parent program to our online educational programming to facilitate in-home communication skills and physical therapies, we are listening and responding to the needs of all of those affected by Rett syndrome. We have also developed the Rett Research Ready (RRR) Program which utilizes an online, customizable search tool called the myRett trial finder to educate parents, care providers and clinicians on clinical trial opportunities and facilitate discussion on appropriate trial participation.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We act on the feedback we receive, We share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

International Rett Syndrome Foundation
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

The people, governance practices, and partners that make the organization tick.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

International Rett Syndrome Foundation

Board of directors
as of 01/10/2024
SOURCE: Self-reported by organization
Board chair

Dr. David Pass

Gordon Rich

Christian McMahan

Beth W Farnum

Bill J Babiarz

Steve Tomes

David Pass

Alan Shukovsky

Leslie Mehta

Mitch Bleske

Lisa Monteggia

Joseph Horrigan

Mary Forrest Engel

Laura Stoppel

Steve Wood

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 12/28/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/10/2024

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.