PLATINUM2023

National Ataxia Foundation

Ensuring no one experiences Ataxia alone, until no one experiences Ataxia, period.

Golden Valley, MN   |  www.ataxia.org

Mission

To accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.

Notes from the nonprofit

NAF continues to prioritize the following key elements of our strategic plan: 1. Connect all people affected by Ataxia, both personally and professionally, with NAF. 2. Mobilize the Ataxia community to advance and participate in research and clinical trials. 3. Enhance local and national support for those living with Ataxia.

Ruling year info

1974

Executive Director

Andrew Rosen

Chief Scientific Officer

Lauren Moore, PhD

Main address

PO Box 27986

Golden Valley, MN 55427 USA

Show more contact info

EIN

41-0832903

NTEE code info

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

NAF aims to accelerate development of treatments and a cure, while working to improve the lives of those living with Ataxia. We fund research and provide support to the scientific community to encourage discovery and innovation that will lead to treatments and a cure. NAF also recognizes the need to support patients in the here-and-now with local support and education about best clinical care practices. We develop programs to address and support patient needs.

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?

Ataxia Research Grants

The National Ataxia Foundation is committed to funding the best science relevant to hereditary and sporadic types of ataxia in both basic and translational research. NAF invites research applications from U.S.A. and International non-profit and for-profit institutions. Non-U.S. citizens are eligible to apply for a research grant from NAF.

Population(s) Served

NAF provides a variety of educational information about topics related to Ataxia, such as diagnosis, drug development, clinical care, research initiatives, living with Ataxia, accessible living, diet & exercise, mental health, and others. We offer information on our website, printable fact sheets, live webinars, an annual patient conference, a comprehensive list of Ataxia specialists, and more.

Population(s) Served

NAF coordinates support groups as a way for the Ataxia to connect and learn from others. There are more than 65 support groups and hundreds of meetings each year. Our volunteer Support Group Leaders provide this invaluable service to the community. There are in-person and virtual meeting options that vary by group.

Population(s) Served
Adults
Adults
Adults

Advocating for those affected by Ataxia is an important part of our mission at NAF. We provide community members with more opportunities to get involved. Advocacy activities expand our partnerships with other organizations and policy makers to help make a difference for people affected by Ataxia. Involvement in advocacy gives us a way to get your stories to policy makers and pharmaceutical companies to grow awareness, accelerate drug development, and ensure access to care and treatment services

Population(s) Served

NAF’s Ataxia Centers of Excellence (ACE) program is to designate exceptional regional centers providing comprehensive care and services for individuals affected by Ataxia and their families. In addition to providing expert clinical care for Ataxia and Ataxia-related disorders, the Centers should be engaged in clinical research and/or clinical trials, provide professional and lay education to patients and their families in the areas they serve, and work with NAF locally and nationally in its efforts to continually improve the lives of those affected by Ataxia.

Population(s) Served

This program for movement disorder fellows provides practical knowledge about the diagnostic investigation and treatment of the Ataxias through a series of didactic talks by clinicians who have significant experience in this area. The attendees are also introduced to ongoing research in the field of Ataxia and offered the ability to personally interact with patients and families affected by a wide-spectrum of Ataxic disorders. The ACT includes topics on diagnostic approach to Ataxias, heredodegenerative and Acquired Ataxias, neurogenetics of Ataxias, treatment of Ataxia, and research on Ataxia.

Population(s) Served

This annual gathering is the world's largest gathering of the Ataxia community. Attendees meet and learn from world-leading Ataxia researchers and clinicians, network, and reunite with old friends. Hundreds of people – from patients, to caregivers, to medical professionals – travel from all over the world to attend the conference. Attendees get the opportunity to learn about Ataxia subjects such as: research, genetics, physical therapy, living with Ataxia, coping, financial planning, caregiving, and more.

Population(s) Served
Adults
Adults
Adults
Adults
Adults

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.

Total dollar amount of grants awarded

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

Ethnic and racial groups, Adults

Related Program

Ataxia Research Grants

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

Our funding capacity varies depending on individual giving to our organization that year as well as the scientific merit of grant applications received.

Total number of grants awarded

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

Adults, Ethnic and racial groups

Related Program

Ataxia Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The number of grants awarded each year varies depending upon individual giving to our organization, the scientific merit of applications received, and the level of support required for each study.

Number of community events or trainings held and attendance

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

Ataxia Support Groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The number of support group meetings held each year is an indicator of the activeness of local events. The Coronavirus pandemic did limit abilities to hold meetings in late 2020-2021.

Number of members from priority population attending training

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

Ataxia Clinical Training

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This program did not begin until 2022. It provides specialized training about Ataxia evaluation and treatment to neurologists and movement disorder fellows.

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.

Our strategic goals are aligned with our organization mission of accelerating the development of treatments and a cure while improving the lives of those living with Ataxia. Our strategic goals are:

1) Connect All People Affected by Ataxia, Both Personally and Professionally, with NAF
WHY: Raising awareness of NAF and Ataxia is critical to accomplishing our vision by identifying the patient population and attracting financial resources.

2) Mobilize the Ataxia community to advance and participate in research and clinical trials.
WHY: Widespread and ongoing participation from the Ataxia community will result in necessary resources for research and clinical trials.

3) Enhance local and national support for those living with Ataxia.
WHY: Providing education and connection to each other are keys to helping improve Ataxians’ quality of life.

GOAL 1 - Connect All People Affected by Ataxia, Both Personally and Professionally, with NAF
• Grow NAF membership, social media groups, and website traffic
• Grow awareness of Ataxia among general neurology field with goal of accelerating diagnosis
• Partners with the Ataxia Global Initaitive and other leading Ataxia organizations around the world to amplify Ataxians’ voice.

Goal 2 - Mobilize the Ataxia community to advance and participate in research and clinical trials.
• Eliminate barriers to genetic counseling and testing to ensure a robust pool of potential patient participants.
• Drug Development Collaborative approves and finances CRC-SCA funding model to ensure availability of clinical trial ready sites.
• Add scientific depth to NAF staff to facilitate industry partnerships and coordinate our research strategy with the Medical and Research Advisory Board.

Goal 3 - Enhance local and national support for those living with Ataxia.
• Work to increase number of Ataxia specialists in the US, with focus on younger researchers/clinicians.
• Develop Ataxia Centers of Excellence program to ensure quality of care.
• Improve development of Support Group leaders to attract and retain best possible volunteers.

• NAF membership, social media groups, and website traffic have grown each year.
• Ataxia Clinical Training program was created and debuted in 2022 - providing specialized training about Ataxia to movement disorder fellows.
• NAF actively partners with Ataxia Global Initiative, having attended their global meeting in January of 2023. NAF also collaborated with other Ataxia organizations to host the International Congress on Ataxia Research (ICAR) in 2022.
• A free genetic counseling and testing program was offered to NAF members in 2022 for Ataxia types SCA1, 2, and 3. We hope to expand that program to other types of Ataxias in the future as funding allows.
• A Chief Scientific Officer was hired in January 2022.
• New grant funding opportunities were introduced with the goal of attracting early career neurology and movement disorder specialists.
• An Ataxia Centers of Excellence Program criteria was developed and invitations for applications began in late 2022. The first Ataxia Centers give the designation will be announced in 2023.
• A Program Coordinator was hired as a support role to improve our Support Group program and coordinate with leaders.

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.

  • Who are the people you serve with your mission?

    We serve patients and their family/caregivers and the Ataxia scientific community.

  • 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), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

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

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    After our last Annual Ataxia Conference, we sent out a post-conference survey for feedback on programming that was offered and suggestions for future events. We received many suggestions that the conference start with smaller breakout session networking events. The attendees felt they'd have had an even better experience if they'd met a few people at the start of the event instead of at the end of it. We adjusted programming for our next conference to try out their suggestion. We hope that it will improve attendee experience and allow them to make more personal connections. We'll include follow up questions after our next event to see how the restructure was received from all attendees.

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    It guides our organization on areas of need and assessing strength of current programs.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, 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 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,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

National Ataxia 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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Build 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.

National Ataxia Foundation

Board of directors
as of 02/06/2023
SOURCE: Self-reported by organization
Board co-chair

Sam Kirton


Board co-chair

Linda Snider-Sidwell, MD

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 2/6/2023
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
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

The organization's co-leader identifies as:

Race & ethnicity
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/06/2023

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • 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 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.