Clubfoot Research Foundation
CTEV - Changing the Future
Programs and results
What we aim to solve
There is no cure for the Congenital Birth Defect called Talipes Equinovarus, aka. CTEV/Clubfoot. The past 10 years added significant scientific insight that should still be incorporated into clinical practice. Our goal is to move the knowledge/research forward quickly using social media since 2011 to make impacts globally in physician knowledge, research topics, and therapy designs.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Education - Changing the Education
1. Bi-Annual Education Event (Tracks4Kids) program in April and October where we educate physicians and patient families about the scope of CTEV and its role in other diseases, slideshows, pamphlets, running since 2017.
2. Providing educational materials such as pamphlets, slideshows, to medical professionals, other non-profit organizations, universities, and government organizations to increase knowledge and awareness.
3. Providing direct patient education to ensure proper care and testing take place. Provide information about access points of care globally about all therapies and options available in order to improve outcomes for patients where possible. Our physician list exceeds other lists published since 2013.
4. Funding marketing materials through TV ads, radio ads, social media online ads and pamphlets to teach how CTEV is a genetic disorder influencing other genetic disorders and to create long term strategies to care.
Research - Changing the Future of Research
Publish to NIH, CDC, Conferences and Medical Journals - Past Projects Complete include: A publication to an NIH Genetic Conference in 2022, Providing 24 Research Topics to the CDC (2014), Providing guidance to the Para-Olympics Medical Board (2019), The Talipes Treatment Initiative (2020), varied university research proposals globally, New Therapy Design projects. We try to ensure that the full scope of patient needs are understood in the design phases of such projects. In 2023 thus far we completed a project that assist a large multicenter research project deciding the study topic for their project.
Awareness - Increase Therapy Access and Product Offering
Supporting patients that need access to a large variety of products, to better address the varied disorder and its anomalies. We increase awareness by documenting successful use of products based on individual complexities, and we use our website and social media platforms to increase knowledge and discussions in order to improve ethical and sustainable practices for a disorder such as CTEV.
Fundraising - Genetic Research
In order to sponsor new genetic, stem cell, or cell biology type research in the future we need to raise large amounts of funding to support larger more detailed studies and educate patient families on genetics to increase access to clinical trials etc.
Advocacy - Patient Family Support
Patient care list and options via our state and country groups specific to certain areas. We need funding to pay someone updating and keeping up this resource for patients continuously as therapies are going to evolve and become more complex. We build into other related non-profits and their understanding of genetic disorders to steer further resource development also.
Where we work
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
Platinum Seal 2022
Guidestar
Affiliations & memberships
Tracks4Kids 2020
Tracks4Kids 2019
Tracks4Kids 2018
Tracks4Kids 2017
Talipes Treatment Initiative 2021
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsAverage number of service recipients per month
This metric is no longer tracked.Totals By Year
Population(s) Served
People with disabilities, Academics, Researchers, Students, Caregivers
Related Program
Education - Changing the 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
Fundraising - Genetic Research
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Capitalizing on the data in other diseases so that we save costs by not redesigning the wheel in this disorder as diseases are interconnected. This will ensure optimal therapy target selections that increases patient safety, and improve outcomes through individual therapy design.
Creating what does not exist yet in terms of patient and physician education.
Sponsor larger more detailed genetic research studies to change the knowledge and insights.
What are the organization's key strategies for making this happen?
Designing new education to drive new protocols and data collection to ensure optimal therapy application which will increase outcomes.
Get new individualized therapies designed for this disorder through advocacy, education and awareness campaigns.
What are the organization's capabilities for doing this?
Longevity and Experience - been around since 2011 and backed up by adult patients going back 80 years.
Currently administers the highest quality resource on social media per orthopaedic and psychiatric physicians.
Large amount of crowdsourced data that exceed the scope of 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.
What have they accomplished so far and what's next?
2011 – 2012 - Families start extensive CTEV online resource analysis, launch own crowdsource data, discover a link to many co-morbidities not captured in studies.
2014 - Provide 18 research gaps to the CDC.
2014 - First Org to publish a complete Brace Progression List and Education about Co-morbidities.
2014 - First Org to publish physician recommendations per states and countries.
2015 - Start registration process towards 501 c 3 status
2016 - Received registration, Publish the Golden Thread Blog to illuminate CTEV scope.
2017 – Attend and Speak at Conferences, 1st CTEV Neuro type study published, Loöf et al:2018.
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. 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 - Accepted an invite from the NIH to participate in genetic discussions and literature drafts.
2023 - Successful in getting CTEV recognized as a rare disease at the NIH. New website created by NIH for CTEV.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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 share the feedback we received with the people we serve, 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
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
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Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 05/15/2023
Mrs A Van Rooyen
Clubfoot Research Foundation
Term: 2016 - 2080
Dr. Dr. B Grandjean
Clubfoot Research Foundation
Term: 2016 - 2028
A Van Rooyen
Clubfoot Research Forum&Foundation
A C Van Rooyen
Thomson Reuters
B Grandjean
Tracks4Kids
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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:
The organization's co-leader identifies as:
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: 06/15/2022GuideStar 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
- 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.
- 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.