FAMILIAL DYSAUTONOMIA NOW FOUNDATION

And If Not Now, When?

aka FD NOW   |   Buffalo Grove, IL   |  www.fdnow.org

Mission

The mission of FD NOW is to discover new treatments and cures for patients with FD.

Ruling year info

2009

President

Mrs. Ann Slaw, JD Esq.

Main address

1170 Green Knolls Dr c/o Ann Slaw, President

Buffalo Grove, IL 60089 USA

Show more contact info

EIN

26-3531031

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

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

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Those with Familial Dysautonomia (FD), a rare, life-threatening condition, are extremely medically fragile. We are working to ensure that those with FD will enjoy long, healthy, productive lives.

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 NOW - Fund FD Research

Currently FD NOW is funding the fast-track research at the Laboratory for Familial Dysautonomia Research at Fordham University in New York, USA.

This lab was the first to discover the gene mutation that causes FD.

Population(s) Served
People with diseases and illnesses
People with physical disabilities

Where we work

Our results

SOURCE: Self-reported by organization

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

Discover a new treatment every three years for Familial Dysautonomia.

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

People with diseases and illnesses, People with disabilities

Related Program

FD NOW - Fund FD Research

Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

Tocotrienol (2003), EGCG ( 2003), Tyramine-free diet (2005), Vitamin A (2010), Beta-carotene (2010), Low Protein Diet (2010), Genistein (2012), Olive Leaf (2013), Probiotic (2016), Pulmicort (2018)

Insure treatments are safe substances.

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

People with diseases and illnesses, People with disabilities

Related Program

FD NOW - Fund FD Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Tocotrienol, Green Tea (EGCG) Vitamin A, Beta-carotene, Genistein, Olive Leaf, Probiotic, Pulmicort

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.

FD NOW was created by parents and family members of individuals with familial dyautonomia (FD). The mission of FD NOW is to find safe, effective, meaningful treatments that optimize the health and quality of life of children and adults with familial dysautonomia (FD). FD is a life-threatening genetic illness that originated in the Eastern European Jewish population. Individuals born with FD have numerous health challenges, the most pervasive of which is being prone to autonomic crisis, characterized by debilitating periods of cyclical vomiting, dangerously high blood pressures and heart rates. While there is no cure for FD, innovative research has led to treatments that have stabilized the health of individuals with FD, moderated the triggers of autonomic crisis, and substantially improved the quality of life of individuals with FD.

FD NOW deploys three primary strategies to achieve its mission:

1) Innovative Research-There are less than 400 known diagnosed cases of FD in the world. With a small population it is very difficult to get the attention of researchers and research institutions to conduct research, let alone translational research that bridges “lab to life” impacts. To achieve its mission FD NOW actively seeks out innovative, creative, “out of the box” thinkers to conduct research. Drs. Berish Rubin and Sylvia Anderson at Fordham University exemplify these attributes, stretching donated dollars to make large impacts in health. Research priorities currently include: 1) Identifying primary autonomic crisis triggers and developing treatments and approaches to prevent them or shorten their duration; 2) Preventing and reversing the advance of osteoporosis, common in individuals with FD.

2) Innovation in Fundraising-As a small community of 400 families, the majority of donations to FD NOW come from individuals with a tie to one or more families with a child or adult with FD. To raise the dollars sufficient to fund FD NOW’s top research goals requires vigilance and creativity. Numerous fundraising events are held throughout the year to fund research. Over 90% of all dollars raised are directly allocated for research.

3) Timely and Credible Patient and Family Education- As new treatments or developments are discovered the FD NOW website serves as the most credible portal for informing families and providing key resources.

FD NOW is parent founded, parent managed, and parent led. Our love for our children provides our greatest capability and strength. The parents leading FD NOW are highly skilled professionals with over two decades of experience in healthcare and public service. The personal connections of our parents and family members drive our activity, and have led to the relationships we currently enjoy with researchers and the success of our fundraising efforts. FD NOW is working closely with a special group of researchers who are highly motivated to help this population.

The accomplishments to date are impressive. Through the efforts of FD NOW and its research community, the gene for FD has been discovered, the mutation isolated and better understood, and safe, effective treatments developed to overcome the effects of the mutation. The lives of children and adults with FD have become much more stable and healthy as a result of these accomplishments. However, many challenges remain. There is no final cure for FD absent gene replacement therapy, which remains a distant vision. As children grow to adulthood numerous health challenges remain such as advancing osteoporosis, and degradation of an already compromised autonomic nervous system. Research efforts continue to focus on the origin of underlying triggers of autonomic crisis to prevent them and help minimize wear and tear on organ systems, and address the issues of adulthood such as osteoporosis.

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 collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    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,

  • With whom is the organization sharing feedback?

    The people we serve, Our board, Our funders, Our community partners,

  • 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 tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection,

Financials

FAMILIAL DYSAUTONOMIA NOW FOUNDATION
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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
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  • Compare nonprofit financials to similar organizations

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FAMILIAL DYSAUTONOMIA NOW FOUNDATION

Board of directors
as of 8/3/2021
SOURCE: Self-reported by organization
Board chair

Mrs. Ann Slaw, JD

Kenneth Slaw, Ph.D.

Ruth Woodruff, JD

Tara Schimmel, MS.Ed.

Terri Horwich, JD

Pat White

Carol Alterman, RDH

Andrea Greenfield, M.A.

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 ? Not applicable
  • 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 08/03/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

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 without 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: 08/03/2021

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 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 have community representation at the board level, either on the board itself or through a community advisory board.