Clubfoot Research Foundation

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.