GOLD2022

THE JOE NIEKRO FOUNDATION

aka Joe Niekro Foundation   |   Frisco, TX   |  www.joeniekrofoundation.com

Mission

The Joe Niekro Foundation™ is committed to supporting patients and families, research, treatment and awareness of Brain Aneurysms, AVMs and Hemorrhagic Strokes. We provide education on the risk factors, causes and treatments of these conditions, while funding the advancement of neurological research.

Notes from the nonprofit

Your donation is essential to supporting our mission and we thank you for joining us in the fight. One person can make a difference in the fight of brain aneurysms, AVMs and hemorrhagic strokes. You can make a difference—it happens every day.

Ruling year info

2008

Executive Director

Elizabeth Hamburg

Main address

15922 Eldorado Pkwy Ste 500 PMB6032

Frisco, TX 75035 USA

Show more contact info

EIN

42-1740818

NTEE code info

Neurology, Neuroscience (G96)

Brain Disorders (H48)

Patient Services - Entertainment, Recreation (E86)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Support is a vital part of recovery and many of America's hospitals do not offer ongoing support and education after a patient is discharged. The JNF Patient Advocacy Program, which includes both in-person and online support forums, provides a variety of benefits, including mutual support, understanding and acceptance, non-judgmental listening, information, validation of feelings, role models, and much more. Our groups offer a safe haven for patients, families, friends, and caregivers to share their fears, challenges, successes, and failures in an atmosphere where they are loved and accepted by all.

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?

Awareness and Education

Social support is exceptionally important in the recovery process and social isolation is considered to be a risk factor for a poor outcome after having a Brain Aneurysm/AVM/Hemorrhagic Stroke. Most hospitals do not offer patients and families ongoing support and rehabilitation for these conditions post discharge. It is our goal to bridge the gap and encourage collaboration, resulting in a more comprehensive support program for survivors and their families.

Our meetings address issues such as depression, social reintegration, coping with disabilities, nutritional brainpower, exercising your brain and much more. JNF empowers members by offering information and emotional support, which is monumental in promoting good health and an improved quality of life. The Joe Niekro Support Groups can play a vital role for both survivor and family members by providing emotional and moral support. Members of support groups receive help by learning new coping strategies, relating personal experiences, obtaining information from health professionals and establishing social networks.

JNF Support Groups help others realize that recovery is possible and designed to motivate attendees to follow wellness plans and make a difference in the community while creating a forum of mutual acceptance, understanding and self discovery.

Population(s) Served
Adults

Funds brain aneurysm, AVM and hemorrhagic stroke research and helps support neurological institutes across the country

Population(s) Served
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.

Number of clients participating in support groups

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

Awareness and Education

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Support group attendance and reach.

Number of groups/individuals benefiting from tools/resources/education materials provided

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

Awareness and Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Support group reach.

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.

To make an impact in both the medical research arena of brain aneurysm, AVM and hemorrhagic stroke treatments and factors, and to help educate the community on the importance of early detection. By offering local support groups for brain aneurysm/AVM and stroke patients, we are able to bring survivors and caregivers together to share their stories, learn how to cope with their conditions and help them get back to the life they once had. Our hospital and research center partnerships are vital in the advancements of treatment options and genetic studies.

JNF is poised to expand our program to have a total of 50 nationwide local support by 2019. These conditions affect people of all ages and in all socioeconomic circumstances. JNF aims to serve all individuals who are at risk, have been diagnosed, or are currently being treated. Our Patient Advocacy Program provides valuable resources, peer-to-peer support and access to medical experts that goes beyond the normal scope of care that medical institutions can provide to these individuals and their families.

To improve the quality of life and overall experience from diagnosis to recovery for brain aneurysm, AVM and hemorrhagic stroke patients and families. Here is a brief summary of our strategic plan for securing our goals
- Develop a clear set of support tools and established delivery method so that all partners and facilitators remain stocked with our materials (i.e. Road to Recovery booklet, videos on website, tip cards, etc.)
- Have 50 Patient Support Groups by 2019 and surpass 10,000 via our online network
- Develop a program evaluation process with measurable metrics

JNF exists to enhance the treatment and care that existing hospitals and medical facilities provide to patients and their families when they receive a diagnosis. This patient support is critical to the successful recovery of these patients and their quality of life during and after treatment.

Our national Patient Services and Education Program is the only one of its kind. It offers patients, survivors and family members a support community and network that is unique in the brain aneurysm, AVM and hemorrhagic stroke arena. Since its inception, our Patient Advocacy Program has grown to include 40 local patient support groups across the country and online support groups used by over 7,400 individuals. We have five separate platforms which ensure that support and guidance is provided to not just the patients, but their loved ones as well. These groups include a Patient Support Group, Caregiver Support Group, Parents Support Group, Teens and Young Adults Support Group, and an Honoring the Taken Support Group for those that have lost a loved one to a brain aneurysm, AVM or stroke. We have aggressive plans to expand these groups in response to a high level of need.
• These groups provide life-saving support to patients, survivors, caregivers and families, both online and in person. 
• Social support is essential to the recovery process and social isolation can greatly reduce patient recovery and outcomes after suffering a Brain Aneurysm/AVM/Hemorrhagic Stroke. 
• Many hospitals are not equipped to offer patients and families the ongoing support post discharge needed for their full recovery. 
• Survivors have the opportunity to meet and learn from other survivors who have experienced similar issues and understand.
• Support group members learn what to expect during their healing process and develop new coping strategies through shared personal experiences. 
• Members have access to healthcare professionals as well as other survivors. 
• Meetings address issues such as depression, social reintegration, coping with disabilities, nutritional brainpower, exercising your brain and much more. 
• Members feel empowered when they receive access to educational information and emotional support that directly helps lead them to improved health and quality of life. 

“A support group can be life saving for a patient and family during their critical recovery period. I have been amazed by the commitment, the diligence and camaraderie of their members. I have been deeply impressed by the benefit my patients and their families have received by interacting with others who have survived the same ordeal. I salute the organizers of The Joe Niekro Foundation™ for all the good that they do, and am deeply grateful for the benefit my patients have received because of their efforts."
Dr. Robert F. Spetzler
Director, Barrow Neurological Institute
Chairman and President, Barrow Neurosurgical Associates
Professor of Surgery, Section of Neurosurgery, University of Arizona College

We continue to grow our patient services and education program and online community.

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?

    AVM, anuerysm, and stroke patients and caregivers

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

    Electronic surveys (by email, tablet, etc.), Paper surveys,

  • 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,

  • What significant change resulted from feedback?

    Recently a support group member wanted to acknowledge the leadership of his group, so we created a recognition program for support group leaders and volunteers.

  • With whom is the organization sharing feedback?

    Our staff, Our board,

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

    Seeing our organization act on their recommendations has increased the flow of communication

  • 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,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently,

Financials

THE JOE NIEKRO 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.

THE JOE NIEKRO FOUNDATION

Board of directors
as of 11/09/2022
SOURCE: Self-reported by organization
Board chair

Mr. Jeffrey Mayer

Brian Bagley

Akerman LLP

Angela Graham

Lindsay Bowerman

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 ? No
  • 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? No
  • 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 11/9/2022

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

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 06/23/2022

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.