Unite 2 Fight Paralysis

Voice of the Cure

aka Unite 2 Fight Paralysis   |   Minneapolis, MN   |  http://www.u2fp.org

Mission

We unite and empower the international spinal cord injury community to cure paralysis through advocacy, education, and support for research.

Ruling year info

2006

Executive Director

Matthew Rodreick

Main address

528 Hennepin Ave. #705

Minneapolis, MN 55403 USA

Show more contact info

EIN

20-3528000

NTEE code info

Alliance/Advocacy Organizations (H01)

Alliance/Advocacy Organizations (G01)

Research Institutes and/or Public Policy Analysis (E05)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Spinal cord injury and disease (SCI/d) paralyzed thousands of people per year. At the moment there are minimal effective treatments for restoring function and overall health to someone who suffers this devastating injury. SCI/D takes young people out of the work force, puts an enormous financial and emotional strain on families, and brings numerous secondary complications that compromise both quality and length of life. We believe that persons living with SCI/D must take a more active role in advocating for treatments that will improve their lives. To that end we are empowering the community with knowledge, organization, advocacy initiatives, and support.

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?

Annual Science & Advocacy Symposium

The Annual Science & Advocacy Symposium brings together the key players in advancing curative therapies: research scientists, clinicians, patients, and family members.  The symposium changes location each year, and has now visited 11 different cities. A virtual attendance option was added in 2019. The symposium will be held in Salt Lake City in 2021.

Population(s) Served
People with physical disabilities

Leading neuroscientists work with community fundraising organizations to review and recommend research and clinical projects worthy of support.

Population(s) Served
People with physical disabilities

The Cure Advocacy Network (CAN) encompasses a wide range of projects including the SCI CureCast podcast, advancement of state initiatives to fund SCI research, The Cure Map film project, and Team U2FP.

Population(s) Served
People with disabilities
People with physical disabilities

U2FP's Executive Director, Matthew Rodreick and SCI Advocate Jason Stoffer co-host the CureCast Podcast interviewing scientists, clinicians, SCI community activists and advocates and members of industry to talk about the various efforts toward curing paralysis

Population(s) Served
Adults
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.

Number of policymakers or candidates reached

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

Cure Advocacy Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Legislators met with over the last 12 months including all of the legislators on the Colleges & Universities Committees and Joint Financial committee and those in CO

Number of government officials who publicly support the advocacy effort

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

Cure Advocacy Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Legislators in WI who signed on to the research funding bill or verbally committed during our hearing. 20 Legislators in MN and PA who supported our efforts in those states….need to look up the Bills

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

We want to see meaningful recovery for people living with the devastating effects of paralysis after spinal cord injury. The majority are injured during their most productive years (20-35), and the cost to families and society is enormous. Our goals are to educate our advocates, foster collaborations and partnerships, and bring voice & visibility to this pressing need.

Convene key stakeholders in the international spinal cord injury community for an exchange of knowledge and strategies for accelerating progress. Develop a knowledgable and vocal advocate population to bring greater visibility to the realities of spinal cord injury. Foster partnerships among scientists and between funders and research projects.

Since our founding in 2005 we have forged partnerships throughout the research, rehabilitation, and advocacy communities. We have helped to advance several lines of promising research. Our leadership team is comprised of persons with a direct connection to spinal cord injury as either survivors or family members; our commitment is unwavering and our integrity is strong - characteristics that are well respected and appreciated in the broader paralysis community.

We have brought attention to the need for research to address the problems associated with chronic SCI/D, and in particular the numerous secondary complications that consumers want to see fixed. The research community is now prioritizing those needs. We have also galvanized community advocates to pass state legislation that will increase dollars for research funding, as well as guarantee that persons with SCI/D sit on review boards and have a voice in decision-making. We will continue to amplify this voice and broaden our connections with the research, funding, and clinical stakeholders.

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), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, surveys at annual Symposium,

  • 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,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners, other similar non profits,

  • 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 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?

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

Financials

Unite 2 Fight Paralysis
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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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lock

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.

Unite 2 Fight Paralysis

Board of directors
as of 06/27/2022
SOURCE: Self-reported by organization
Board chair

Michael Burris

Retired

Term: 2021 - 2023

Barry Munro

Canadian Spinal Research Organization

Mike Burris

Retired

Alexander Rabchevsky

University of Kentucky, College of Medicine

Christel Mitrovich

Reneu Health Inc.

Traci Fernandez

TRYAbility Rehab

Johnnie Edwards

Retired

Quinn Brett

CO DNR

Jim Hamer

DP Clinical

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? No

Organizational demographics

SOURCE: Self-reported; last updated 5/6/2021

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
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 05/06/2021

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 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 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 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.