GOLD2023

Spastic Paraplegia Foundation, Inc.

Research/Education/Support

aka SPF   |   O'Fallon, MO   |  www.sp-foundation.org

Mission

The Spastic Paraplegia Foundation is committed to promoting research to find cures for Hereditary Spastic Paraplegia and Primary Lateral Sclerosis, to educating people and their families affected by these conditions to help them live full and productive lives and to creating opportunities for mutual support and sharing.

Ruling year info

2002

President

Mr. Greg Pruitt

Vice President

Mrs. Linda Gentner

Main address

6952 Clayborne Dr

O'Fallon, MO 63368-6202 USA

Show more contact info

EIN

04-3594491

NTEE code info

Fund Raising and/or Fund Distribution (G12)

Neurology, Neuroscience (G96)

Brain Disorders (G48)

IRS filing requirement

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

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

HSP and PLS are “orphan” disorders, largely unknown to the public and generally overlooked by the medical and pharmaceutical communities. And, with no known public figure/celebrity spokesperson who is afflicted with either disease, the thousands of Americans suffering from HSP/PLS have even less of a public platform. This began to change with the establishment of the Spastic Paraplegia Foundation (SPF) in 2002.

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?

Research / Education / Support

The SPF's primary focus is to raise funds for HSP and PLS research. We also organize national conferences and support groups, publish a bi-monthly electronic newsletter, operate online support groups and provide the only comprehensive, medically reviewed website on these conditions.

Population(s) Served
Adults

We are working on a webinar that will medically explain the Hereditary Spastic Paraplegia Disease. When it is completed, we will invite neurologists and general practitioners all over the country to sign on to the webinar to learn about HSP.

Population(s) Served
Adults

Where we work

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.

1. To support research to find a cure or treatment for two closely related rare upper motor neurological disorders, Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS).
2. Increase funds raised to support HSP and PLS research by 7%.
3. To create a STAR Program (Strategy to Advance Research) whereby we work with intermediary laboratories to provide scientists easy and low cost ways to test drugs they suspect could have a positive effect with HSP or PLS. We will do this by having stem cells of different most prominent HSP genes available in petri dishes such that the laboratory we contract with can test the hopeful drugs against those stem cells looking for efficacy.
4. To create partnerships with several of the new genetic science companies popping up all over the world to the best methods of genetic engineering to see if and when this can be effective with people with the over 80 different HSP genetic disorders
5. To finish a currently running longitudinal study of PLS patients so that the PLS normative standards are readily accepted and understood among the neurological community such that Clinical Trials for the new very promising ALS drugs can be tested against accepted PLS benchmarks.

1. A systemized donor communication program where separate demographics are communicated with at set times of the year.
2. Test several new fund raising programs such as galas in 3 different areas of the country, developing a system where we are able to use email blasts to communicate with donors based on their recency, frequency and monetary giving history.
3. Working better with volunteers to find people with language skills and expertise that they could use to write articles for our newsletter.
4. We are working with the world's top PLS experts who are running a longitudinal study of PLS patients all over the world to discover what is normative for PLS such that effective benchmarks are determined by which the effectiveness of different promising ALS drugs can be tested in Clinical Trials.
5. We are working with the world's top genetic scientists to know what treatments are working well and which are not working well for similar genetic disorders such that we will know when science has progressed to the point where people with HSP can be tested with genetic engineering.

Our board of directors is comprised of many highly skilled individuals who donate countless hours to our Foundation on a volunteer basis. These include an experienced attorney, a CPA, a PhD in genetics, a retired president of a Direct Marketing Co., a prize winning high school teacher, a judge, an engineer, an investment analyst and several more. We work closely with NORD, AFP, NEALS and several international organizations with a similar mission statement to help help and support research to cure HSP in Australia, Spain, England, and Germany. We have a Scientific Advisory Board of world renowned international neurological experts who volunteer their expertise to rate all research proposals we receive so we are able to support the very best research possible on this planet.

The indicators that progress is taking place with HSP and PLS research is that in 2020, a research paper was published on HSP and PLS every 3 days. In 2021 we will be supporting research that is actually testing 2 drugs in a phase 2 trial with people with HSP. Our fund raising has increased over 10% in the last year. Our website has been revamped. Our newsletter has been improved with 50% more pages. We are developing a communication plan with major donors that is showing great progress. We now have a monthly email newsletter that accompanies our quarterly printed newsletter. We are running monthly zoom meetings where people can hear from and know about the scientists that are leading the charge toward cures for these diseases.

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 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

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to get honest feedback from the people we serve

Financials

Spastic Paraplegia 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

Subscribe

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.

Spastic Paraplegia Foundation, Inc.

Board of directors
as of 02/15/2023
SOURCE: Self-reported by organization
Board chair

Mr. Greg Pruitt

No Affiliation

Term: 2012 - 2024

Mark Weber

No Affiliation

Frank Davis

No Affiliation

David Lewis

No Affiliation

Tina Croghan

No Affiliation

Corey Braastad

Covance

John Cobb

No Affiliation

Greg Pruitt

No Affiliation

Jim Sheorn

No Affiliation

Hank Chiuppi

No Affiliation

Linda Gentner

No Affiliation

Jackie Wellman

No Affiliation

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 3/11/2022

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
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-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: 07/04/2021

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • 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 disaggregate data by demographics, including race, in every policy and program measured.
  • 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • 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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • 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.