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International Rett Syndrome Foundation

Rettsyndromeorg

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 311682518 ✦ Cincinnati, OH ✦ Designated as a 501(c)(3)

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Overview

What is International Rett Syndrome Foundation?

The International Rett Syndrome Foundation, operating under the name Rettsyndromeorg, is a dedicated nonprofit organization based in Cincinnati, Ohio. Their primary focus is to spearhead groundbreaking research aimed at finding treatments and ultimately, a cure for Rett syndrome. They achieve this by funding various research grants globally, supporting post-doctoral researchers, and hosting scientific symposia for Rett syndrome experts to share ideas and collaborate. The foundation also invests in compound development by funding high-throughput screening systems and clinical trials. To enhance treatment access and care, they support the Natural History Study and sponsor a learning collaborative for evidence-based care for Rett syndrome patients. Beyond research, the foundation empowers families by providing them with essential knowledge and resources.


Official website here: www.rettsyndrome.org

What do the Facebook reviews say about International Rett Syndrome Foundation?

94% of 246 reviewers on Facebook recommend the International Rett Syndrome Foundation. Here is a summary of their reviews:

Many users appreciate the supportive community the foundation fosters, noting that it serves as a valuable sharing group for families affected by Rett Syndrome. The sense of connection and resource exchange among members has been highlighted as a significant benefit, providing both emotional support and practical information.

Overall, the nonprofit seems to effectively meet the needs of families seeking guidance and camaraderie in their journeys with Rett Syndrome, creating a positive experience for its members.


This AI summary has been generated from reviews found on Facebook.

Is International Rett Syndrome Foundation legitimate?

International Rett Syndrome Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. International Rett Syndrome Foundation submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.


Heare are some key statistics you may want to consider:

Executive Compensation: $429,937
Professional Fundraising Fees: $0
Other Salaries and Wages: $655,580

For more financial information, click here


Official website here: www.rettsyndrome.org

What is the mission statement of International Rett Syndrome Foundation?

The International Rett Syndrome Foundation's mission is centered around accelerating comprehensive research to find a cure for Rett syndrome. Their primary objective is to empower affected families by providing them with essential knowledge. Through their research programs, they fund various types of studies globally, including basic, translational, and neuro-habilitation research. They support post-doctoral researchers, host scientific symposiums, fund compound development, and sponsor clinical trials. Additionally, they work towards expanding access to high-quality treatments and care by supporting the Natural History Study and sponsoring a national learning collaborative focused on evidence-based care for Rett syndrome patients.


Official website here: www.rettsyndrome.org

Who is the CEO of International Rett Syndrome Foundation?

Melissa Kennedy is the Trustee of International Rett Syndrome Foundation.


Official website here: www.rettsyndrome.org

What is the revenue of International Rett Syndrome Foundation?

International Rett Syndrome Foundation's revenue in 2022 was $3,669,308.


Official website here: www.rettsyndrome.org

Who are the executives of International Rett Syndrome Foundation and what are their salaries?

The average compensation at International Rett Syndrome Foundation during 2022 was $77,537. There are 14 employees and 200 volunteers at International Rett Syndrome Foundation.


Here are 14 key members and their salaries:


Steve Tomes (Trustee)
  • Compensation: $0
  • Related: $0
  • Other: $0
Beth Farnum (Trustee)
  • Compensation: $0
  • Related: $0
  • Other: $0
William Babiarz (Board Chair)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jospeh Horrigan Md (Trustee)
  • Compensation: $0
  • Related: $0
  • Other: $0
Lisa Monteggia Phd (Trustee)
  • Compensation: $0
  • Related: $0
  • Other: $0
David Pass Pharmd (Vice Chairman)
  • Compensation: $0
  • Related: $0
  • Other: $0
Mitch Bleske (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Christian Mcmahan (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Gordon Rich (Founding Seat - Non Voting)
  • Compensation: $0
  • Related: $0
  • Other: $0
Alan Shukovsky (Trustee)
  • Compensation: $0
  • Related: $0
  • Other: $0
Leslie Mehta (Trustee)
  • Compensation: $0
  • Related: $0
  • Other: $0
Melissa Kennedy (Executive Director)
  • Compensation: $165,981
  • Related: $0
  • Other: $275
Dominique Pichard (Chief Science Officer)
  • Compensation: $263,680
  • Related: $0
  • Other: $0
Timothy Frank (Chief Marketing & Developm)
  • Compensation: $118,218
  • Related: $0
  • Other: $926


Official website here: www.rettsyndrome.org

Where can I find the form 990 for International Rett Syndrome Foundation?

International Rett Syndrome Foundation's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.rettsyndrome.org

Learn more at the official website: www.rettsyndrome.org

Mission Statement of International Rett Syndrome Foundation

The International Rett Syndrome Foundation is dedicated to accelerating comprehensive research aimed at finding a cure for Rett syndrome. Their mission is threefold: firstly, they fund various types of research, including basic, translational, and neuro-habilitation studies worldwide. Secondly, they support the development of potential treatments by financially backing high-throughput screening systems and clinical trials. Lastly, they strive to enhance access to high-quality treatments and care by sponsoring initiatives such as the Natural History Study and a national learning collaborative focused on evidence-based care for patients with Rett syndrome. In essence, the International Rett Syndrome Foundation's mission is to financially empower researchers, drive advancements in treatment development, and ensure patients have access to the best possible care, all with the ultimate goal of finding a cure for Rett syndrome.

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Impact




October, 2024

The International Rett Syndrome Foundation significantly advances the research landscape for Rett syndrome, driving towards potential cures while empowering affected families. By funding innovative research programs, including basic, translational, and neuro-habilitation studies globally, the foundation plays a pivotal role in the continuous development of scientific knowledge and advancements in treatment options.

Through generous funding of post-doctoral research and hosting science symposia, the foundation facilitates collaboration and knowledge-sharing among leading experts in the field. Additionally, direct financial support for high throughput screening systems and clinical trials accelerates the process of translating research findings into viable therapies.

The foundation's commitment extends beyond research; it aims to enhance access to high-quality treatments and care through initiatives like the Natural History Study. By sponsoring a national learning collaborative, it promotes the definition and implementation of evidence-based care practices for patients with Rett syndrome, ensuring families receive the best possible support and treatment options. Overall, the foundation's work fosters a comprehensive approach to tackling Rett syndrome, from cutting-edge research to familial empowerment and advocacy.




This information is meant to be a general summary of International Rett Syndrome Foundation. Please take the time to review official sources before making any decisions based upon the content provided here.


Financials

This financial information is from Propublica.

Revenue
$3,669,308 (2022)
Expenses
$5,494,227 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: -$108,882
  • Program Service Revenue: $310,152
  • Gross Receipts: $6,570,277

Assets and Liabilities:

  • Total Assets: $6,438,774
  • Total Liabilities: $1,972,873
  • Net Assets: $4,465,901

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Programs

Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.

Conference Income

Revenue

$310,152

Organization Details

Founding Year

1999

Principal Officer

Melissa Kennedy

Main Address

4500 Cooper Road Suite 204, Cincinnati, OH, 45242

NTEE Category

Code: H128 - Medical research

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