FAMILIAL DYSAUTONOMIA NOW FOUNDATION
And If Not Now, When?
Programs and results
What we aim to solve
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
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.
Where we work
External reviews

Videos
Our results
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, Tyramine-free diet, Carnosol
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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 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, and vision loss, common in individuals with FD. 3) Continuing to discover nutraceutical treatments that elevate ELP1 (aka IKAP.)
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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, address the issues of adulthood such as osteoporosis and vision loss, and discover nutraceutical treatments that elevate ELP1 (aka IKAP.)
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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
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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
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Operations
The people, governance practices, and partners that make the organization tick.
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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Connect with nonprofit leaders
SubscribeBuild 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.
FAMILIAL DYSAUTONOMIA NOW FOUNDATION
Board of directorsas of 05/09/2023
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
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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
Gender identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 08/03/2021GuideStar 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
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We have community representation at the board level, either on the board itself or through a community advisory board.