PLATINUM2023

Familial Dysautonomia (FD) Foundation, Inc.

aka Familial Dysautonomia (FD) Foundation   |   New York, NY   |  www.familialdysautonomia.org

Mission

The Familial Dysautonomia Foundation funds medical treatment, research, and operates social services and public awareness programs for the benefit of people afflicted with Familial Dysautonomia (FD).

Notes from the nonprofit

As the Foundation commemorates 70 years of serving the FD community, we acknowledge that only because of friends like you we have been able to accomplish so much. We sincerely thank you for your continuous interest and support.

Ruling year info

1976

Executive Director

Ms. Lanie Etkind

Main address

315 W 39th St., #701

New York, NY 10018 USA

Show more contact info

EIN

13-6145280

NTEE code info

Fund Raising and/or Fund Distribution (G12)

Birth Defects, Genetic Diseases Research (H20)

Alliance/Advocacy Organizations (W01)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Familial Dysautonomia is an ultra-rare disease, with fewer than 350 people currently affected worldwide. There is no approved treatment for the disorder--current treatments aim to reduce the symptoms but are not effective for all and do not effectively address the degenerative effect of the disorder.

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?

FD Treatment and Research Centers

Treatment and Research Centers at NYU Medical Center (USA) a

Population(s) Served
People with diseases and illnesses
Jewish people

All FD patients, families, doctors and researchers are invited to come together to hear about medical advances, research projects, foundation accomplishments and FD community news.

Population(s) Served
People with diseases and illnesses
Jewish people

Basic, translational and clinical research projects at leading institutions around the world.

Population(s) Served
People with diseases and illnesses
Jewish people

We provide oxygen concentrators to help ease the stress of traveling.

Population(s) Served
People with diseases and illnesses
Jewish people

Where we work

Videos

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 invitations for advocates to speak as experts

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

Chronically ill people, People with vision impairments, People with physical disabilities, People with other disabilities, Children and youth

Related Program

FD Day Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

14 overall

Number of volunteers

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

Chronically ill people, People with hearing impairments, People with other disabilities, People with physical disabilities, People with vision impairments

Related Program

FD Day Conference

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

Volunteers help in the office and at special events. The Foundation often sponsors college interns interested in non-profit management, marketing, communications and healthcare.

Number of groups/individuals benefiting from tools/resources/education materials provided

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

Children and youth, Older adults, Young adults, People with physical disabilities, People with vision impairments

Related Program

FD Treatment and Research Centers

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Direct and indirect population benefiting from our Foundation's programs

Number of clients served

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

Jewish people

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This includes patients, their immediate and extended family, and carriers.

Number of health outcomes improved

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

FD Treatment and Research Centers

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Medical care and support provided by the Dysautonomia Center, with support from the FD Foundation, continues to enhance and extend the lives of those affected by FD

Total number of conferences held

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

FD Day Conference

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of paid participants in conferences

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

FD Day Conference

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of competition entrants

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

FD Day Conference

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

FD Day Art competition

Number of people who receive inpatient care and get significantly better

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

FD Treatment and Research Centers

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Dysautonomia Center patient care

Number of support groups offered

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

FD Hangouts & FD Virtual Game Nights

Total number of counseling sessions performed

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

FD Treatment and Research Centers

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

FD Mental Health Program

Number of clinic visits provided

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

FD Treatment and Research Centers

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

Dysautonomia Center at NYU Langone

Number of patient visits

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

FD Treatment and Research Centers

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

Dysautonomia Center at NYU Langone

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.

We work to provide the best possible medical treatment, scientific research, public education and social services for the benefit of the familial dysautonomia (FD) community and related autonomic disorders.

We have established and fund the world's only FD treatment centers to insure that FD patients can receive superior medical care.
We have established the world's only FD clinical research lab for investigation of new therapies and better understanding of FD symptoms.
We have established the world's only two endowed professorships for FD research and treatment.
We have re-energized our Scientific Advisory Board with international experts from many related fields , and have empowered them to help us identify potential treatments.
In addition to funding ongoing work at the Dysautonomia Center at NYU Langone, the Foundation also promotes scientific research, hosts an annual symposium for families, offers programs to enhance the mental health and well-being of our population, builds community and serves as a resource for affected families.

Our medical programs provide acute care, annual evaluations, long-term treatment protocols, and local physician collaboration for the medical care of all FD patients. Our FD clinical research lab is the only facility in the world dedicated to investigating new and existing medical therapies and researching the underlying mechanisms of FD symptoms.

Due to the efforts of our medical team, life expectancy and quality of life have steadily and significantly improved over the last 40 years. Our research teams have uncovered a wide variety of breakthroughs in understanding and treating FD. Research we have funded identified the gene that causes FD, and our researchers have been recognized by the US Patent and Trademark office as the sole inventors of this dramatic discovery, resulting in carrier screening and opening the door to genetic therapies.
Scientists working with the Foundation are currently pursuing a number of promising treatments aimed at slowing or stopping progression of the disease and are optimistic that one or more may soon be ready for testing in the clinic.
Researchers studying FD are also learning about the cellular and molecular pathways that cause neuronal death in Alzheimer’s, Parkinson’s, ALS and multiple sclerosis; treatments for FD may be effective in these more prevalent diseases as well.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
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 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 look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Familial Dysautonomia (FD) Foundation, Inc.
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Operations

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

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Connect with nonprofit leaders

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

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Familial Dysautonomia (FD) Foundation, Inc.

Board of directors
as of 09/14/2023
SOURCE: Self-reported by organization
Board chair

Ms. Faye Ginsburg

New York University

Edward Baranoff

no affiliation

Paul Wexler

no affiliation

Laurent Landau

no affiliation

Jeffrey Goldberger

no affiliation

Faye Ginsburg

no affiliation

Allan Cohen

no affiliation

Steven Fass

no affiliation

Steven Kietz

Lisa Newman

Gerald Adler

Daniel Landau

Gregg Meyers

Jennifer Sonenshein

Brian E. Stillman

Howard Weiser

Rebecca Sernovitz

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 1/20/2023
info Candid has made improvements to the race and ethnicity options.

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 (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 01/20/2023

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 have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
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 measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.