Grassroots Initiative

The Clubfoot Research Foundation is a Grassroots Initiative with the aim to improve outcomes for CTEV and its Co-Morbid disorders assisting patient families since 2012.

 

This vision is captured in our logo with the slogan, “Change the Future”. We became the first patient led non-profit in the USA in 2016 as a registered 501 (c) 3 organization. 

​Why Donate To The CRF?

We believe our list of completed projects clearly confirms how we play a role in the research and education of the CTEV patient. This work is ongoing and developing continuously. 

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First and Only!

The CRF was the first patient led educational resource registered as a 501 (3) in the USA. We provide education to all stakeholders to improve and expand the quality of research about CTEV and its associated co-morbidities. To achieve these goals the CRF completed a translational analysis process and produced documents submitted to research projects and conferences over the past fourteen years. Organizations that benefited from these efforts include:

 

1. Global Universities such as Pennsylvania, Scotland, Malaysia, South Africa, New Zealand and more.

2. We support Orthotic Companies such as C-Pro Direct, Cunningham Prosthetics, Hanger Orthotics, D-Bar (Dobbs Brace) and engineering or physical therapy students globally frequently with online discussions, and provide guidance re product development to serve the CTEV patient population.

3. Shriners Multicenter Study Group (2022), Older Kid-to-Adult Outcome Study - Analysis provided.

4. Talipes Treatment Initiative (Global 2021). 

5. CDC (2014) - Provide Research Gaps about CTEV. 

6. NIH (2022)  - The CRF was the first organization advocating for increased genetic research funding at the National Institute of Health, publishing an abstract to an NIH conference in 2022. This effort yielded increased funding as from 2024 for new genetic research in the future.

7. The CRF was one of the earliest adopters of using social media in non-profit education expanding the reach globally to learn. 

8. The CRF provided the first new alternative description for CTEV, published the first specialist physician referrals lists on social media scientific discussion group in 2012.

9. The CRF provided the first product summary and product progression list for patient families lost to standard protocol failures. 

10. The CRF increased awareness of global Physical Therapy and Kinesiotaping Methods, such as the Mili Method, thereby increasing patient options that needed more complex therapeutic solutions and these insights yielded encouraging feedback and better outcomes. Indirectly this effort led to more hybrid therapies tested globally - outcomes improved and some has recently been confirmed in scientific literature that emerged between 2017-2024.

11. The CRF provided the first literature categories to simplify education for patient families and other stakeholders since 2012 in our private social media groups - Deploying a combination of validated sources of data were unique in the arena and aided families to seek out more specific care and protocols some of which aided reducing the stigma surrounding this diagnosis. 

11. The CRF were the first non-profit to advocate for the recognition of mental health impacts in CTEV and its associated Co-Morbidities - our Slideshows presented to conferences of Physician groups since 2017 and our social media education inspired new scientific studies on this topics that started to emerge in 2017.  

11. The CRF created the first online support and education groups in a series with similar names on social media - Today these Usage Trademarks are used to provide local education about resources available locally, and it alerts medical professional followers about training events by experts and literature published from their countries.  As such these name series' (varied ones) are not available to be used by other organizations.  

12. The CRF continuously study new data and incorporate it into our existing insights. This allows us to provide suggestions to patient families no matter the age of the patient, the diagnosis or the complexity. Nursing and Physician Patients confirm that we have helped them tremendously on their own health journeys and a few of their testimonies are available on www.greatnonprofits.org.​

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​What Do We Provide?

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Care

We are the first step toward hope and progress whether you are wondering about a diagnosis, options, availability of therapies or specializations in your area. We help with disease-specific research and resources no matter where you live where possible. We can help you find expert care and are continuously growing this knowledge for the future. Our expert referrals are based on case specific detail that takes more time and effort, but it is essential to CTEV patient families. 

Education

We strive to continuously improve education, sharing our insights where it matters to ensure gaps are addressed through additional scientific studies as evidence have been limited and research gaps are extensive.

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Research

We strive to accelerate and advance new innovative solutions providing data to organizations such as Universities and other Non-Profit organizations, Students and Hospitals.

 

Community

We have many diverse support and educational discussion groups. This helps you connect with others in your state or country at least for tips and information. See our groups on this website and on Facebook. Search for Clubfoot (and add the Country Name or State in the USA). We frequently help nurses and physicians with their health conditions and have feedback that our insights helps them manage or navigate complex situations - ensuring that the therapies to include are accurate and appropriate.

Honorary Mentions!

We honor the giants that started before us with literature analysis 44 plus years ago! CTEV affects patients from all walks of life, including medical professionals. Your dedication, passion, analysis and feedback forms the basis of the intellectual capital we continue to build on in this organization. It is the only pathway to improve the quality of life for all CTEV patients!