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. Clinical practice is severely behind Scientific knowledge and advances, suffering a lot of insurance constraints and other obstacles such as product delivery and skilled practice. 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 using social media since 2011 to make impacts globally in physician knowledge, insight and understanding of the disorder. We enhance research projects by helping projects globally understand the complexity before their projects even start. We are therefore addressing research quality and scope. We provide education at conferences and physician offices as well as patient family education and support, guiding patients that has nowhere else to go after system failures.

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

1. Educating Physicians and Patients (Tracks4Kids) program with research analysis and educational slideshows since 2017.

1. Education physicians globally using social media to reach physicians globally. - We provide research, and insightful discussion topics. We provide information regarding where students can access certain trainings etc.

2. Providing direct patient education to ensure proper care and testing take place.

3. We are a trusted resource for accurate information per medical professionals that are top in this field such as Dr. Matthew Dobbs at the Paley Institute in Florida.

Population(s) Served
Adults
Children and youth
Ethnic and racial groups

The Clubfoot Research Foundation analyze the CTEV arena, its literature and outcomes each year and share new research gaps, with organizations such as the NIH and the CDC, university researchers, global projects for new brace designs and technology designs at engineering departments. We help professionals understand the disorder before designs begin.
Between 2016-2020 we provided education at various conferences and added another Non-Profit as a partner to design education specifically for physicians globally. We presented our ideas at the Tracks4Kids Conference in April and September from 2016-2022.

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

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 BY PROVIDING THE education regarding non-invasive methods and by creating new taping methods where all other options fail.

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 a higher level of ethical sustainability.

Population(s) Served
Adults
Families
Men and boys
People with disabilities
People with diseases and illnesses

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
Men and boys
People with diseases and illnesses
People with disabilities
Women and girls

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
Children and youth
People with disabilities
People with diseases and illnesses

We build into other related non-profits and their understanding of genetic disorders, steer research questions and adding knowledge to non-profit leadership to ensure the right questions are getting asked in the first place and that the allocation of scarce funding goes to higher level projects with larger goals and targets upstream.

Population(s) Served
Adults
Children and youth
Women and girls
People with disabilities
People with diseases and illnesses
Adults
Children and youth
Women and girls
People with disabilities
People with diseases and illnesses

Where we work

Accreditations

Great Non Profits Golden Seal 2021

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 2018

Guidestar

Gold Seal 2019

Guidestar

Gold Seal 2020

Guidestar

Golden Seal 2021

Great Non-Profits

Gold Seal 2021

Guidestar

Golden Seal 2019

Great Non-Profits

Gold Seal 2018

Great Non-Profits

Gold Seal 2017

Great Non-Profits

Gold Seal 2017

Guidestar

Affiliations & memberships

Tracks4Kids 2020

Tracks4Kids 2019

Tracks4Kids 2018

Tracks4Kids 2017

Talipes Treatment Initiative 2021

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Average number of service recipients per month

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities, Economically disadvantaged people, Unemployed people, Military personnel, Academics

Related Program

CTEV Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Facebook Insights Reach for one of our pages

Pounds of clothing donated

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

Genetic Research Advocacy

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of adults with disabilities receiving sufficient social and emotional support

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Members in our adult groups

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 ensure each disorder takes it rightful place so that research targets can be illuminated clearly, in order to move the therapies designed towards the original causes. Therefore, build patient specific therapies instead of blanket approaches.

Raise funds for research, education.
We support research projects already all over the world, from brace design discussions to creating knowledge about patient complexity.

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. We are creating a research library for future parents, caretakers, patients and physicians in Texas that also support neurological and psychiatric physicians at an education center for such physicians.

Designing Education to bring clinical practice in line with scientific progress.

Increase Social Media to increase awareness.

We are building relationships between medical practitioners through social media platforms and collaborate with other non-profits to achieve the goal of improving life quality for those affected by CTEV.

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 treatment options all over the world.

We provide expert knowledge of services and options to patients directly.

Longevity and Experience - been around since 2011

We created the highest quality resource on social media per orthopaedic and other physicians.

Large amount of crowdsourced data that exceed literature

Skilled Datamining and analysis - Identifying research gaps continuously

First to source new New Products, New Information, New Literature and to introduce various new concepts into the education in this arena.

The only non-profit that works across different therapies, not just a single therapy preference because the patient need drives this.

2011 – 2012 - Families start extensive 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, register the FDN, Publish Golden Thread Blog to illuminate CTEV complexity and co-morbidities further.
2017 – 2018 - Attend and Speak at Conferences, 1st CTEV Neuro type study published, Loöf et al:2018. Started separate awareness groups for different disciplines in healthcare.
2019 - Drafted a new Golden Thread Diagram that includes another body system
2019 – 2020 - Designing a new course for medical professionals and patients. Varied other publications. Registered the Clubfoot Research Store and trademarked logo's etc. Completed a project for the para-Olympics, helped three universities choose from our research gaps.
2021 - Working on series of courses to be launched on YouTube in collaboration with another non-profit to enhance the knowledge and insight regarding CTEV, participated in a university brace project to build their knowledge and insight regarding patient complexity. Drafted a case report on taping and its outcomes. Helped 5 single moms advocate for improved care and outcomes.
2022 - started to make other organizations aware (NIH etc.) of our discoveries and understanding to create awareness for future changes that needs to be implemented regarding genetic disorders. Working on an invite from the NIH to participate in genetic discussions and literature drafts. Finished the first physician/patient education slideshow and continue with the second series. Helped 500 patients find more information on their journeys towards improved health care options. Drafting our second case report on taping methods used to improve the education of physical therapists etc.

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 diagrams we designed for the disorder has been updated and presented at conferences. It is because we listen that our content is higher in quality.

  • 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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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.

Clubfoot Research Foundation

Board of directors
as of 06/17/2022
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: 2016 - 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 6/16/2022

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
The board cannot choose between the limited options. Everyone is mixed.
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

The organization's co-leader identifies as:

Race & ethnicity
Uncertain how to choose between the limited options, everyone is mixed
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 06/15/2022

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.
  • 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.