Improving Our Understanding - Benefits All!
THE JOURNEY
The CRF more complete description of CTEV, combined with the CRF's discussion identifying 24 major research gaps in CTEV research shared in 2014 with the CDC and Universities, other non-profits and Government Institutions jumpstarted research in the CTEV arena.
The diagram of the Golden Thread published in our blog in 2016 further led to new questions and renewed physician interest in CTEV and its vast unexplored research targets. This provided us with the opportunities to share the insights we gathered from thousands of patient families, and today research databases reflect a substantial increase in the scope of scientific study titles and the overall number of studies published per year.
Other Completed or Ongoing Projects - See the Home Page
A few of the projects we successfully completed using translational research analysis, statistics combined with other sources of data allowed us to contribute to numerous varied projects over the past thirteen years and our collaborations include:
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Other Non-Profits and Businesses - Environmental analysis for a Veteran project - 2023
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A Special Olympics Committee CTEV Athlete Participation Analysis - 2019
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Advocacy for non-invasive therapies for patients that completed the Golden Standard Method - 2016, 3 yrs. old till adulthood.
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Orthotic companies that benefited from our work include C-Pro Direct, Cunningham Prosthetics, Dobbs Brace Company, Exosym (Hanger), Fabtech PDE, Momentum, AFO/KAFO/DAFO brace companies like Hanger Orthotics, the French Functional Methods, the Mili Method, Physical Therapists and Kinesiotaping practitioners etc.
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Increasing awareness of CTEV and Neurological Disorder Risk 2012-Ongoing - varied presentations to conferences and explanations provided to physicians and othe
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Co-Morbid Non-profit organizations.
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Conferences such as the GLIA Conference, Tracks4Kids, Genomic Conferences 2017-2024, and more...
Ongoing Projects to Improve Education & Research
We continuously do datamining the find new products first and to introduce such products to patient populations as this disorder itself require many solutions as a complex disorder.
Increasing access for older patients to new and existing non invasive therapy options.
We spread awareness regarding educational opportunities for physicians and other role-players through our global groups and forums on social media free to Institutions that introduces their educational opportunities on our forums and groups.
We gather data for university projects and students to increase their knowledge and understanding of CTEV before product design occurs.
Other Residual Changes & Wins
1. Research Topics Studied Expanded Significantly between 2011-2024 - Doubled
2. Education and Customer Service from involved Businesses such as Orthotic Companies Improved as we created a platform where feedback could be provided faster and more efficiently followed by quicker action to address problems earlier - thereby improving outcomes.
3. Improved access to alternative methods - Improves Outcomes that lead to new data entering this arena.
4. Other non-profits improved their education (albeit limited) modelling the example set by our organization about transparency, ethics and giving back!
Changing The Future!
Our education efforts ensure that patients and caretakers develop a better understanding of their diagnosis and therapy options available. We do this by providing comprehensive translational research data, information and genetic education that we procure analyzing numerous data points. This means including all disease data for considerations.
Medical Professional feedback and confirmation of our work appears on Non-Profit Measuring Platforms such as Great-Nonprofits that collects feedback - A few are displayed on the website on the Home-Page.
For the future of CTEV and with the knowledge we have procured the education in this arena will be gradually improved through medical journal publications we are preparing to introduce next - so keep in touch! Join our mailing list and groups on the website!