nonprofit logo

Dysautonomia Foundation Inc

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

EIN: 136145280 ✦ New york, NY ✦ Designated as a 501(c)(3)

Shop smarter and support your favorite cause at the same time! With the Give Freely browser extension, you'll automatically save money with coupons, and partner stores will donate to your chosen charity - at no extra cost to you. Start giving back with a single click. It's safe, free, and spam-free, guaranteed!

Overview

What is Dysautonomia Foundation Inc?

The Dysautonomia Foundation Inc, also known as Familial Dysautonomia Foundation, is a nonprofit organization based in New York City, specifically at 315 W 39TH STREET 701, New York, NY 10018. Committed to helping individuals impacted by or at risk of Familial Dysautonomia (FD), the foundation provides a wide range of support services. These include medical care, research, social services, and public education. Their mission encompasses operating programs aimed at enhancing the lives of those affected, promoting advancements in understanding FD, and raising awareness about the condition. With a dedicated workforce of five individuals, the Dysautonomia Foundation Inc continues to strive for improved care and support for individuals affected by this condition.


Official website here: www.familialdysautonomia.org/

What are the reviews and ratings of this charity?

98% rating from Charity Navigator.

The Dysautonomia Foundation Inc, also known as the Familial Dysautonomia Foundation, has achieved a remarkable Four-Star out of Four Star rating, indicating its strong performance in various operational areas. The organization excels in accountability and finance with a perfect score, reflecting its commitment to transparency and responsible resource management. With 93% of its board members being independent, this fosters effective governance and oversight.

User feedback highlights the significant impact the foundation has had on individuals affected by Familial Dysautonomia, a rare genetic disorder. Reviewers praise the foundation for its initiatives in funding research, improving treatment options, and increasing awareness of the disorder. The foundation has notably contributed to extending life expectancy and enhancing the quality of life for patients, as illustrated by personal accounts from families directly benefiting from its work.

Despite its strengths, there is a slight concern regarding its Leadership & Adaptability score, which is notably lower than other areas. However, the foundation's overall commitment to its mission and the perceived effectiveness of its programs suggest that it remains a valuable resource for those affected by this condition. The feedback indicates a supportive community around the foundation, further enhancing its reputation and reach.


This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.

What do the Facebook reviews say about Dysautonomia Foundation Inc?

94% of 13 reviewers on Facebook recommend Dysautonomia Foundation Inc. Here is a summary of their insights:

Many users appreciate the organization as a valuable resource for information and support regarding dysautonomia. The consensus is that the foundation effectively addresses the needs of individuals affected by this condition, providing reliable resources that help educate and inform both patients and caregivers.

Overall, the commitment to raising awareness and offering guidance resonates positively among those who engage with the foundation. The positive sentiment suggests that Dysautonomia Foundation Inc. delivers on its mission to support the dysautonomia community.


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

Is Dysautonomia Foundation Inc legitimate?

Dysautonomia Foundation Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. Dysautonomia Foundation Inc 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: $281,357
Professional Fundraising Fees: $0
Other Salaries and Wages: $94,919

For more financial information, click here


Official website here: www.familialdysautonomia.org/

What is the mission statement of Dysautonomia Foundation Inc?

The Dysautonomia Foundation, operating under the name Familial Dysautonomia Foundation, is committed to supporting and managing programs that cater to the medical needs, research, social services, and public education of individuals affected by or at risk of Familial Dysautonomia (FD). Their mission is centered around improving the quality of life for these individuals by providing essential medical care, driving research efforts to further our understanding of the condition, offering social services, and promoting public awareness about Familial Dysautonomia.


Official website here: www.familialdysautonomia.org/

Who is the CEO of Dysautonomia Foundation Inc?

Allan Cohen is the Executive Dir. of Dysautonomia Foundation Inc.


Official website here: www.familialdysautonomia.org/

What is the revenue of Dysautonomia Foundation Inc?

Dysautonomia Foundation Inc's revenue in 2022 was $1,577,517.


Official website here: www.familialdysautonomia.org/

Who are the executives of Dysautonomia Foundation Inc and what are their salaries?

The average compensation at Dysautonomia Foundation Inc during 2022 was $75,255. There are 5 employees at Dysautonomia Foundation Inc.


Here are 16 key members and their salaries:


Lanie Etkind (Executive Dir.)
  • Compensation: $235,000
  • Related: $0
  • Other: $46,357
Faye Ginsburg (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Allan Cohen (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Edward Baranoff (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Laurent Landau (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jeffrey Goldberger (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Steven Kietz (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Lisa Newman (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Paul B Wexler (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Steven S Fass (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jennifer Sonenshein (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Howard Weiser (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Gerald Adler (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Gregg Meyers (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Daniel Landau (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Brian Stillman (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.familialdysautonomia.org/

Where can I find the form 990 for Dysautonomia Foundation Inc?

Dysautonomia Foundation Inc's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.familialdysautonomia.org/

Learn more at the official website: www.familialdysautonomia.org/

Mission Statement of Dysautonomia Foundation Inc

The Dysautonomia Foundation, also known as Familial Dysautonomia Foundation, is dedicated to supporting and operating various programs aimed at providing medical care, research, social services, and public education. This nonprofit organization focuses on benefiting individuals affected by or at risk for Familial Dysautonomia (FD), a complex medical condition. Through its initiatives, the Dysautonomia Foundation aims to improve the lives of those affected by this condition, providing them with the necessary resources and support. The organization's mission is multifaceted, encompassing medical care, groundbreaking research, essential social services, and extensive public education, all with the goal of bettering the lives of those living with or at risk for FD.

Shop smarter and support your favorite cause with the Give Freely browser extension. Save money with coupons and donate to charity with a single click. Download now!

Impact




October, 2024

The Dysautonomia Foundation Inc plays a crucial role in supporting individuals affected by familial dysautonomia (FD) through comprehensive programs that enhance medical care, research, and social services. By focusing on public education, the Foundation raises awareness about this rare genetic disorder, ensuring that both the medical community and the general public are informed about the challenges faced by those living with FD.

The Foundation’s commitment to research fosters advancements in understanding and treating the condition, benefiting not only patients but also families at risk. Through its work, the organization provides essential resources and support services that improve the quality of life for affected individuals, thereby making a significant impact on the dysautonomia community. Located in New York, the Foundation's initiatives serve as a vital lifeline for families navigating the complexities of this condition.




This information is meant to be a general summary of Dysautonomia Foundation Inc. 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
$1,577,517 (2022)
Expenses
$1,830,056 (2022)
Efficiency

Other financial information:

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

  • Investment Income: $20,987
  • Gross Receipts: $1,705,537

Assets and Liabilities:

  • Total Assets: $2,168,499
  • Total Liabilities: $139,650
  • Net Assets: $2,028,849

Want to help this charity, for free? You can click here to learn more about Give Freely

Organization Details

Founding Year

1954

Principal Officer

Allan Cohen

Main Address

315 W 39TH STREET 701, NEW YORK, NY, 10018

NTEE Category

Code: G50Z - Disease

If you are a representative of Dysautonomia Foundation Inc and wish to learn more about how Give Freely can help you raise funds, please click here: https://givefreely.com/nonprofits/. Our services are offered at no cost to your organization.