GOLD2024

The Stiff Person Syndrome Research Foundation

Breaking through barriers to find a cure

Bethesda, MD   |  https://stiffperson.org
This organization is a 501(c)(3) Private Nonoperating Foundation (This organization has notified the IRS of its intention to convert to a public charity, and the IRS has ruled that grantors and contributors may consider it a public charity for the purpose of making contributions to the organization.).

Mission

Our mission is to raise awareness of Stiff Person Syndrome (SPS), to support research for better treatments and a cure for SPS, while strengthening our community through education and collaboration.

Notes from the nonprofit

The Stiff Person Syndrome Research Foundation was originally formed as a Private Foundation, and shortly after inception determined to operate as a Public Charity. We have operated as a Public Charity since 2020 and in 2021 the International Revenue Service acknowledged our transition to Public Charity status. This transition takes 60 months and during the probationary period, the IRS recognizes The Stiff Person Syndrome Research Foundation as a Public Charity (view the October 13, 2021 letter outlining this here: https://apps.irs.gov/app/eos/detailsPage?ein=842291780&name=The%20Stiff%20Person%20Syndrome%20Research%20Foundation%20Inc.&city=Bethesda&state=MD&countryAbbr=US&dba=&type=CHARITIES,%20DETERMINATIONLETTERS&orgTags=CHARITIES&orgTags=DETERMINATIONLETTERS).

Ruling year info

2019

Founder + CEO

Dr. Tara Zier

Main address

8621 Burdette Rd

Bethesda, MD 20817 USA

Show more contact info

EIN

84-2291780

NTEE code info

Fund Raising and/or Fund Distribution (H12)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Blog

Programs and results

What we aim to solve

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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?

Support SPS Research

Provide funding to the Johns Hopkins Stiff Person Syndrome Center for research into diagnosis into SPS and other autoimmune diseases.

Population(s) Served
People with physical disabilities
People with other disabilities
Chronically ill people

Where we work

Affiliations & memberships

Chan-Zuckerberg Initiative Rare As One 2022

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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 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

  • 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 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

Financials

The Stiff Person Syndrome Research 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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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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The Stiff Person Syndrome Research Foundation

Board of directors
as of 09/18/2024
SOURCE: Self-reported by organization
Board chair

Tara Zier

Lara Vujovic

Instagram

Helena Zec

Vidyashankar Krishnan

James Weiss

Organizational demographics

SOURCE: Self-reported; last updated 9/18/2024
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
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

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

Equity strategies

Last updated: 11/01/2022

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.
  • 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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.