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2021 Top-Rated Nonprofit

Clubfoot Research Foundation

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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases, Nerve, Muscle & Bone Diseases Research

Mission: Educate & Support all affected by CTEV globally, creating awareness and generating new ideas, to sponsor and support new research.

Results: We are the change! New research topics and projects are emerging due to the work of the CRF. We support researchers, universities and physicians with literature and knowledge. We answer questions but most of all provide HOPE when the physicians give up. We provide new avenues to pursue and explore with our 4 tier analysis approach. Ask us about WGS testing. Send an email to info@clubfootresearch.org

Target demographics: Anyone affected by Clubfoot or Congenital Talipes Equinovarus

Direct beneficiaries per year: 12 000 patients globally

Geographic areas served: Globally

Programs: Education and support about treatment options, research analysis, raising funds for new genetic research yielding new knowledge

Community Stories

47 Stories from Volunteers, Donors & Supporters

1 Catriona M.

Client Served

Rating: 5

My daughter was born in 2017 with bilateral clubfoot. An, from the Clubfoot Research Foundation, has been unrelenting in her support of me, our journey, and pursuit of better treatment for all affected by clubfoot. She responds, comprehensively and thoughtfully, incredibly quickly. The Clubfoot Research Foundation is one of the few resources for people to share stories, research and support. My daughter has a very complex case of clubfoot and it can feel a very lonely journey, with very few clear paths. Having the support of the Clubfoot Research Foundation has been invaluable. Thank you x

1

Client Served

Rating: 5

This non-profit helped us! We are overseas and they helped us where resources are scarce. Highly recommend them for knowledge, resource knowledge, availability of physicians to access. Insightful answers and responses!

1

General Member of the Public

Rating: 5

So happy to write this review for an honest, ethical organization in an area of medicine that needs so much attention still. They gave me insight and information that is far above the quality of other responses on the internet! Really quality work by Madison, An, Marlie, and Jennifer! Guys thank you, thank you, thank you! You are all knowledgeable and very inspiring people. All we were looking for was ideas regarding other therapies and they provided a ton of options for my daughter!

Client Served

Rating: 5

Recently we ran into a roadblock when our child relapsed. We did not expect this as the treatment is supposed to work long-term. When I spoke to these guys we realized that we did not understand this disorder fully. The education is so weak at treatment facilities, in fact, there is none. Super thankful for the education this non-profit provides and they even helped my husband with his old foot! We did try a few others but their knowledge and insight are just focused on small children! These guys go above and beyond the four years of bracing! Top-Notch guys!

1

Advisor

Rating: 3

I have severe corrective surgery from clubbed foot and want to get involved. Limitations and chronic pain have propelled me some directions as well as limited me in others. I want to relate to a community and drive potential impact toward those approaching similar challenges.

Comments ( 1 )

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clubfootresearchforum 10/16/2021

Please do not post poor ratings to our non-profit page if you represent another non-profit. The username you used represent an existing non-profit in the arena and therefore this review is not considered valid. Please consider emailing us your comments at info@clubfootresearch.org for discussion as this is not the platform to discuss this on. We are happy to work with volunteers that are willing to sign the necessary paperwork to participate.

Client Served

Rating: 5

Clubfoot is a congenital birth defect that has not received the attention and research that is on par with other birth defects thus far. This organization has a lot of information I never knew about my debilitating condition and their willingness to debate and learn exceeds other non-profits in existence. Many just copy directly from them as far as I can see. Their information on social media has helped me tremendously in making decisions regarding surgery and outcome potential. They also provide advice about genetics that is out of this world helpful. On top of everything, they are the kindest people there are to talk to online. It does not matter whether you speak to Marlie, An, Melissa, Jennifer they are all knowledgeable and kind!

Previous Stories
4

Client Served

Rating: 5

As an adult living with CTEV and someone who experienced and researched all information on the internet, I am very happy to provide this non-profit with a review. From all websites, blogs and groups I have researched their information seem to be the original quality education on this subject matter dating back to 2013. They reported issues long before literature captured it and they still provide an objective and quality analysis of research. Simply put their education to both patients, medical professionals and businesses are the BEST! They are delightfully honest and compassionate about helping knowledge move forward and they improve the understanding and interpretation of medical professionals who were let down in their education. I will keep providing you all with a review as it is not often that a non-profit provide such quality information to patients and in such detail all for free. You have helped me access treatments I did not know existed that did not show up in my research and searches. The options you all provide to patients to explore are awesome!

1

Client Served

Rating: 5

What a great group of people! They helped me understand my adult complex situations and options and it’s free. If they don’t know they go and try and find the answer and they got me access to a top doctor also!

1

Client Served

Rating: 5

Not many places help real people these days. This one does! Through their research, they found a new direction for us to explore in a system where we became stuck very quickly for no answers! Cannot recommend them enough! They make a point of not claiming anything or promising a pie in the sky but they keep growing their knowledge and they get back to us frequently if they find new information or areas of interest.

4

General Member of the Public

Rating: 5

I thank An for helping me get better treatment for my daughter. She was patient in answering all my questions and gave me the best referrals. I am so glad that during my time of need, there was someone to answer and reassure me. So thank you.

3 Maggie Malone N.

General Member of the Public

Rating: 5

Having a clubfoot son with no relatives known of having clubfeet. This is a great resource and help with treatment. So grateful for the amazing research they do to help patients like us!

2

Client Served

Rating: 5

Being born with a club foot has been very difficult over the years. This organization has a lot of information I never knew about my debilitating condition. Their information on their Facebook site has helped me tremendously in making decisions about my foot and my life to come.

5 Helly T.

Client Served

Rating: 5

Clubfoot Research Foundation was very helpful in a harsh time. An’s and other parents’ support was very meaningful to me along these years. My child hasn’t got any physio lately but it’s one the ‘relapsed’ ‘recasted’ kids with comorbities and ‘idiopathic’ Clubfoot. This group of people helped me to research and understand, to get more involved in his therapies without any judgment. Thank you

4

Client Served

Rating: 5

I am adding these folks to my Amazon Account to help them out immediately. Where others pulled up their shoulders, they gave us a new road to explore, and they were right! WOW guys you blew our minds and you were so humble through it all. At least you are aiming to bring the knowledge whereas others just told us there is no hope, we should accept the status quo! Together you all are a powerful instrument that gives people more to explore and you do it for free! At last some good people. You told us about all the products and options where others only focus on one we already knew did not work for us. At least you all understand that!

5

Client Served

Rating: 5

Recently got advice from this non profit! I posted a question on social media and they provided the best advice! They provided a full picture not just a quick answer. The social media groups that claims to do the same had no advice, just agreed with me. They have send me literature and videos and they are just great nice helpful people who cares about others. I can not recommend them enough for anyone with questions about treatment, genetics, the whole journey! Good job you all. You really stood out above the others!

3 CLeverC

Client Served

Rating: 5

I love this organization! Run by people with know-how and a lot of heart, families turn to the Clubfoot Research Foundation when they run out of treatment options and when they face the most difficult times in their lives regarding health care decisions. So many stay on to mentor other families, going on to enhance the lives of others with their experiences and knowledge. Moreover, they provide practical solutions where medical professionals are stumped. They are open to discuss options at any time and always have been able to provide us with out of the box ideas of where to investigate and find new hope! What an amazing group this is.

Previous Stories
5

Client Served

Rating: 5

This non profit is changing the way research is written up these days. Where publications used to claim a cure it now acknowledges the total extend of the condition all because of the advocacy of this group!

4

General Member of the Public

Rating: 5

CRF changed the trajectory of my treatment and gave me the info to empower myself and take control of my foot health.

4

Client Served

Rating: 5

Met the folks at this non-profit online and what a great bunch of folks they are. I spoke to several of them about brace options, after experiencing problems in the standard and they provided information without expectation which turned out to be absolutely accurate after I had discussions with several orthotists! We are now using a product that works and our lives changed for the better! These guys know their stuff and we will forever be thankful!

4

Client Served

Rating: 5

I am so grateful to have found the CRF group. I have learned more about the condition, treatment options and complications from the group than from any doctor I have talked to in our two year journey so far. They do such important work regarding research and advocacy which is sorely needed in the treatment of clubfoot and various other co morbid conditions. Keep up the good work!

3 MarLie Jo L.

Client Served

Rating: 5

We wouldn’t be where we are without the CRF. They have supported us through our journey no matter which treatment route we decided to go, giving us the tools and resources we need.

Previous Stories
6

Client Served

Rating: 5

The Clubfoot Research Foundation is the only organization within our sector of medicine to give fact-based education and information. They have helped me, as well as countless others, who have struggled with the consequences of not receiving proper standard of care. Before entering this community, I had no idea how to be an advocate for my son. I felt helpless as a new mom. Through our contact I’ve grown ten-fold, and have gained the confidence and education I needed to pursue advocacy. They have been extremely dedicated to reviewing and revisiting any and all research pertaining to Clubfoot; while maintaining a non-biased standpoint. They are pertinent to the progression of our sector of medicine. They answer questions, concerns, and are a 24/7 resource. Their services extend beyond “behind the scenes”; as they are frontline with us daily. Their alliance is to their community.

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2 Louise H.2

General Member of the Public

Rating: 5

This group really helped me to understand more about my clubfoot. Which treatments help, how to cope on a daily basis with pain. They also help you understand more about diagnoses, doctor letters etc. Brilliant charity.

4

General Member of the Public

Rating: 5

I was born with clubfoot in 1973 and this foundation has provided much needed advice, guidance and support as my issues have progressed throughout my life. The info provided has helped in my search for answers and helped shape my treatments.

3

Professional with expertise in this field

Rating: 5

CRF is one of a kind doing the legwork of a university research dept, only more efficiently and with more conviction! I applaud their work and dedication!

3

Professional with expertise in this field

Rating: 5

In just the last 2 years alone, Clubfoot Research Foundation has made significant inroads into educating the general pblic AND medical professionals on the truth about living with club feet. I am thrilled to see the committment from this organization maintain an upward trajectory, reaching out to people around the world to build a real base to promote serious research into this life-long condition. Thank them for their excellent work!

Previous Stories
6

Professional with expertise in this field

Rating: 5

As someone living with club feet for 65 years, who is also involved in trying to find solutions for adults and teens with the same condition, I have been stupefied that there is so little real research into the long-term impacts of club feet. And then along comes Clubfoot Research Foundation with a plan to change that poor equation into one that actually tackles the subject. Hundreds of thousands of people in the US alone deal with chronic pain every day due to poor outcomes from childhood treatment, so the upside for even base-line research can impact many, many lives. I donated to this Foundation because I know the issues. But I hope to elicit people without CF to come to recognize a reality that they no little about, but almost certainly know of someone who is affected.

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6 Jennifer Bleything W.

Client Served

Rating: 5

I was born in 1975 and treated by Dr. Ponseti from birth to age 5. I continued to have problems which eventually resulted in many bone surgeries in adulthood. CRF has been an invaluable resource as I seek treatment options at age 44.

4

General Member of the Public

Rating: 5

Born in late 50’s Texas... Mistreated because we had no money and the Docs truly did not understand this defect... Attempted experimental repairs at the U of Iowa Children’s Hospital in the mid 60’s... massive pain for most every step I have taken for 55 plus years... But I am lucky because I get to walk... Many ended up crawling like dogs on the past. This in its many forms is the most common birth defect in the world, and Docs barely know more than they did 60 years ago.... with research maybe we will find proper treatment... and no one will be bullied or shamed because they can run like everyone else !!!!

4 Klaire H.

General Member of the Public

Rating: 5

Without finding the Clubfoot Research Foundation, I would never have questioned the treatment process my little girl was receiving. She is 7 and uses a wheelchair, I’ve been told so many different things but now have clarity, and going forward I have a clear vision of what will benefit her the most, the tests which are relevant to ensure the correct treatment and this is fully the result of contacting the CRF. I have now launched our own charity in the UK and hope to spread the word of the CRF and raise awareness of clubfoot and all its complexities

3 Stephanie M.14

General Member of the Public

Rating: 5

An and her members help so many parents who have questions on treatment for club-foot. They give out research to help the children who need better or different treatment.

6 Melissa B. G.

Client Served

Rating: 5

We've always known clubfoot was genetic in my family. My dad has it, 2 of his uncles and 1 cousin has it, I have it and, to my utter disbelief and heartbreak, my twin boys have it. As a nurse, I became pretty well versed in reading and interpreting research and had always been looking for answers. When i found out that my only biological children (identicals, so same DNA) would have it too, i became a woman on the warpath for answers! I have learned more from CRF than i ever learned on my own. They are constantly updating their findings and theories as they develop. For the first time in my life, I feel like the answers are right around the corner! Thank you CRF for all you do!

3 Ubaid Ullah K.

General Member of the Public

Rating: 5

I am PT and working as club foot specialist and believe this plate form gave always the best researches i am looking for.
Thank you

4 Sean S.2

Client Served

Rating: 5

I am 37 yrs old and have dealt with various doctors and medical practitioners for years. I was to a point where I could either have my lower limbs removed or live in excruciating pain for the rest of my life. Until I found CRF, or rather they found me. Not knowing exactly what is going on in your body is scary, and I have spent a number of years treating symptoms, wondering if any of it would even help. Since meeting the staff at CRF I have found a new hope in not only working towards answers for my club feet but also other medical issues in my life. These people are truly amazing in their work, care and understanding of what my life is like and in helping me. If I could give them all the money in the world to continue their research and outreach to all of us who share this debilitating ailment...I would without hesitation many times over. I can not express my gratitude and admiration into enough words to show how much they truly mean to me and in my life. If more people would get involved with CRF and listen, we might be closer to answers that actually work for us all.

4

General Member of the Public

Rating: 5

We were on the verge of divorce and a complete family breakdown when we discovered this group. Malpractice and a complete treatment disaster that was put on our shoulders to carry. When we learned more by studying this group and basically were provided with a logical, sensible and high quality education everything turned around for us. We found more resources here than anywhere else. They offer life changing knowledge every Talipes family should receive before treatments start

5

Professional with expertise in this field

Rating: 5

The Clubfoot Research Foundation is an amazing resource, a place for support, advice, assurance and knowledge for anyone affected with clubfoot, young or old, and their families. The foundation seeks to continually keep abreast of new studies, thoughts and developments, as well as encouraging people to share past and current experiences. The foundation is invaluable to the Clubfoot community. I am the owner of a company that works with parents and the medical profession, and I am also the mother of a 14 year old not with Clubfoot. The support and advice we have received from the Clubfoot Research Foundation has been nothing short of wonderful.

5

General Member of the Public

Rating: 5

Great support for parents and clubfoot sufferers. Open-mindedness and real commitment to research. An asset for the clubfoot community.

Previous Stories
4

General Member of the Public

Rating: 5

I am interested in etiology, benefits of other functional methods and long term prospects for clubfoot carriers. There is a need for more support of difficult cases, late relapses and pain management. Any group that offers real support and practical solutions to tricky situations is a bonus. The Clubfoot Research forum and the Clubfoot Research Forum Foundation ask all the right questions and promote research in restricted fields. They offer support to clubfoot carriers worldwide. We can share personal knowledge and discuss issues that are not often discussed on other clubfoot groups.

5 Candace M.1

General Member of the Public

Rating: 5

I am so grateful for the clubfoot research forum. They have the most knowledge in my opinion when it comes to clubfoot. They are knowledgeable when it comes to different treatment methods and strive to know more and spread awareness

2

Client Served

Rating: 5

This non-profit has the highest quality of education for this condition. The information and discussions are original and honest. High integrity in this group. Lots of learning opportunities constantly. It helped us greatly on our journey!

6 Carrie W.1

General Member of the Public

Rating: 5

I'm so glad to have found the Clubfoot Research Foundation. We're pretty lucky to be dealing with a fairly straightforward case, but there have been several junctures that just didn't feel right. The Foundation has given us the information we needed to empower ourselves and be good advocates ❤

5 Ariel English I.

Client Served

Rating: 5

Answers questions about clubfoot treatment methods with empirical research. Objective and professional. Interested in empirically supported research of ALL treatment methods. Unbiased and helpful.

5 Becky Shue W.

General Member of the Public

Rating: 5

Its a trying process with clubbed feet. Its good to have a go to place for information with this condition. Most of us when we got the diagnosis have had to look on line in various places to get the information we need. Its trying, as there's so many opinions and what to expect. Each case is so individual you don't know what is the best but having a place like this makes it easier.

4 Amanda H.1

Client Served

Rating: 5

Before find the Clubfoot Research Foundation we felt overwhelmed and not sure what to do about our son's treatment. There is little to no research or support easily accessible and we have found most of our doctors have not dealt with it or have little experience. The best advice we ever got was to educate ourselves so we can be in charge of our son's childcare and know when something isn't right. The research articles posted and the polls have been so useful with educating not only our family, but even our medical team.

4

Client Served

Rating: 5

Without the help of this forum, I would not have found a better treatment option for my daughter. I have always found the advice to be candid and unbiased, while also giving legitimate supporting evidence for all sides of the equation. They led me toward an educated decision I can feel confident about and continue to provide positive discussion toward the progression of clubfoot treatment and research.