Clubfoot Research Foundation

CTEV - Changing the Future

aka Clubfoot Research Foundation   |   FRISCO, TX   |  www.clubfootresearch.org

Mission

Educate and support all touched by CLUBFOOT/CTEV globally, raising awareness, generating new research insights/ideas that include the support and sponsoring of new quality research efforts.

Notes from the nonprofit

This non-profit started to publish educational resources and current research for discussion in 2011 on social media. It is the most valued CTEV resource currently on social media per physician and patient feedback and is followed by medical professionals globally. We serve the largest congenital birth defect in the world. This condition (despite affecting more people on earth than any other condition) is the least researched. It runs co-morbid with hundreds of other serious disabling conditions and finding a cure is therefore a sustainable action that will save millions for governments globally. We published a blog called the Golden Thread in 2016 on our website and started the track for new terminology and research. Solving the problem of CTEV will solve or improve the puzzle of the Neurological, Neuromuscular, Connective Tissue, Endocrine, and Skeletal system co-morbidities.

Ruling year info

2017

President

Mrs A Van Rooyen

COO

Mr A C VAN ROOYEN

Main address

PO BOX 213

FRISCO, TX 75034 USA

Show more contact info

Formerly known as

Clubfoot Research Forum

EIN

81-2429387

NTEE code info

Birth Defects (G20)

Fund Raising and/or Fund Distribution (B12)

Birth Defects, Genetic Diseases Research (H20)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

No cure or partial successful treatment exists for the Congenital Birth Defect called Talipes Equinovarus, aka. CTEV/Clubfoot. Research and treatments are severely behind other disorders and the methods used are over 100 years old! New ideas and sensory-friendly products are blocked from entering the marketplace and monopolies plague the system. Our goal is to move the knowledge/research forward quickly. We are addressing the quality of research - providing research topics and gaps to universities and researchers and students. We provide education at conferences and physician offices as well as patient family education 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?

CTEV Education

Providing free information/global discussions to educate all stakeholders - currently serving a dedicated

1. Physician group with literature, research, and insightful discussion topics that address the challenges physicians face.

2. Providing patient education to ensure proper care and proper testing take place for this very underserved patient population.

3. Suggesting and Requesting research from universities and researchers to address the research gaps.

4. Identifying the research gaps through our own education process to pass on to entities such as the CDC and universities.

5. We are a trusted resource for accurate information per medical professionals and we are building further on that by publishing at conferences and address challenges through our website and social media discussions.

Population(s) Served
Adults

We provide insight into published research and we provide research gaps to universities, the CDC, and other government entities, to orthotic companies and other businesses operating in the CTEV world.

Between 2016-2020 we provided education at various conferences and added another Non-Profit as a partner to design education specifically for physicians across the globe. We presented our ideas at the Tracks4Kids Conference in April and November from 2016-2020 as well as at the GLIA Conference.

We generate research ideas before any published information appears on those topics by marrying three sources of data that are unconventional each on its own but together yields the powerful insight that is missing from medical records. We do not charge this service and provide it for free to entities to move the research forward more rapidly at the moment.

Population(s) Served
Adults

Supporting and creating acceptance for all new products but specifically focusing on more dynamic products that use new research insight as part of its development. We make these products more acceptable and address the bullying of patients by unscrupulous business practices.

We increase the accessibility of the information through our social media platforms and discussions to create an environment where bullying is not tolerated. Therefore making businesses more ethical and sustainable and the world right now needs ethical sustainability.

Population(s) Served
Adults
Families

Setting up services, new research, and provide information and data on new products and services to adult patients.

We also provide emotional support through our social media platform to adult patients that often face disability, amputations etc.

Population(s) Served
Adults

Sponsor new genetic, stem cell, or cell biology type research in the future by raising the funds to expand the knowledge about CTEV/Clubfoot or publish our own novel research to push this topic into the future.

Population(s) Served
Adults
Families

Where we work

Accreditations

Great Non Profits Golden Seal 2020

Great Non Profits Golden Seal 2019

Great Non Profits Golden Seal 2018

Great Non Profits Golden Seal 2017

Guidestar Golden Seal 2020

Guidestar Golden Seal 2019

Guidestart Golden Seal 2018

Guidestart Golden Seal 2017

Awards

Golden Seal 2020

Great Non Profits

Gold Seal 2017

Guidestar

Gold Seal 2018

Guidestar

Gold Seal 2019

Guidestar

Gold Seal 2020

Guidestar

Affiliations & memberships

Tracks4Kids 2020

Tracks4Kids 2019

Tracks4Kids 2018

Tracks4Kids 2017

Talipes Treatment Initiative 2021

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 educate all stakeholders about Clubfoot/Congenital Talipes Equino Varus globally, generate new ideas and education, support, promote, and assist new quality research projects.

Raise funds for research, education, and supporting projects such as new designs of bracing products.

To continue our education efforts by keeping up to date with new treatments and opportunities for this condition and to assist researchers with the work that still needs doing.

Social Media for awareness, education, and reaching researchers and medical professionals globally.

We are building relationships between medical practitioners and those who receive the treatments in order to improve the total outcome for those affected by the congenital disability.

Up to date analysis of recent literature to keep stakeholders in the know with the latest options.

We educate medical professionals quickly and effectively about new treatments popping up all over the world.

Social media allows us to increase education that reaches the corners of the globe.

Constant research keeping in the know

Longevity and Experience - been around since 2011

We created the highest quality resource on social media

Large membership and membership is global

Skilled at Datamining and Identifying research gaps

The capability to handle large amounts of data and interpretation/analysis skills

First to source new New Products, New Information, New Literature

2011 – 2012 - Families start exhaustive CTEV online resource analysis, launch own crowdsource data, discover CTEV, and Neuro Link not captured in any literature.
2013-2014 - Link genetics & neurological dispositions, suggest 18 research gaps, and request a new definition for CTEV. First Org to publish a complete Brace List and Education. First Org to publish physician recommendations per state group. First, org to request new and more research for CTEV.
2015 – 2016 - Collect data, launch CRF – Publish Golden Thread Blog to illuminate CTEV complexity and co-morbidities
2017 – 2018 - Attend and Speak at Conferences, 1st CTEV Neuro Study get published, Loöf et al
2019 – 2020 - Varied authors publish more CTEV neuro studies, CRF Drafted new Definition to be globally accepted in the future, and to drive protocol changes to increase data collection for future research efforts. Publication date 1 November 2020

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, caretakers, medical professionals and the general public

  • 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), Case management notes, Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email, Discussions with members,

  • 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?

    A member recently reported issues with her endocrine system which we incorporated into our research project to write and define the disorder CTEV. After much research we found so much more information that we now are going to publish as part of our physician education effort. The slide show will be presented at conferences and used to educate all stakeholders in the future. It is because of our listening and engaging with actual patients that we are able to identify the research gaps and the knowledge gaps and we pass those on to other organizations responsible for research in other disorders, even the CDC.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

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

    Direct feedback from patients guides our decisions from the beginning. We listen where others do not. We incorporate suggestions that are often ignored by others. We have evolved as a result from the inputs we received. We are now the most collaborative non-profit in this sector of medicine

  • 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

Clubfoot 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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Clubfoot Research Foundation

Board of directors
as of 6/18/2021
SOURCE: Self-reported by organization
Board co-chair

Mrs A Van Rooyen

Clubfoot Research Foundation

Term: 2016 - 2080


Board co-chair

Mr A Van Rooyen

Clubfoot Research Foundation

Term: 2017 - 2020

A Van Rooyen

Clubfoot Research Forum&Foundation

A Van Rooyen

Thomson Reuters

B Grandjean

Tracks4Kids

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 06/18/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

The organization's co-leader identifies as:

No data

Race & ethnicity

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 06/18/2021

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 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 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.