This Mendeley guest post talks about how a crowdfunding campaign is bringing an innovative research design from Stanford University to children in developing countries struggling with clubfoot.
By Janeen B. Gingrich, MSW, Associate Director of Philanthropy, miraclefeet
When I first heard about miraclefeet and clubfoot, I felt compelled to get involved. I had done a lot of work towards ending social problems in the US, many of which felt unsolvable, and I had seen untreated clubfoot growing up in Thailand. But now that I was a new mom, this issue really resonated with me even more. Why? Because untreated clubfoot is a problem that can be solved. Once you start talking to more people about it, you wouldn’t believe how common it is. Clubfoot affects one out of every 750 children worldwide, making it one of the most common birth defects in the world. Yet it is one most people might not even be aware of. In the US, Europe and the UK, it is usually detected in utero and treated without surgery shortly after birth, allowing the child to live a healthy, active lifestyle. In fact, Mia Hamm, Kristi Yamaguchi, Steven Gerrard and Troy Aikman – all very successful athletes – were born with clubfoot and received proper treatment.
In contrast, 80% of children born with clubfoot in the rest of the world have no access to treatment. A treatment that, from start to finish, costs an average of $250 total.
Unfortunately, children, and then of course, adults, living with untreated clubfoot face incredible hurdles their whole lives. Often they are shunned from society – left alone and hidden away as youngsters because the family is ashamed. Because walking is so difficult, they are usually unable to attend school. These children are subject to higher risk of neglect, poverty, physical and sexual abuse. They might end up begging or working unsafe jobs and facing a life of discrimination and pain. Below is a photo of a young father in India who lives with untreated clubfoot (on left) and his son Pradeep, who was also born with clubfoot, but is being treated in a miraclefeet-supported clinic.
The miraclefeet brace is a low-cost ($20) foot abduction brace developed at the Stanford d.school through the Design for Extreme Affordability course, in collaboration with miraclefeet, Clarks Shoes and Suncast, to treat clubfoot using the non-surgical Ponseti method. Brace compliance is the most important variable in achieving a good treatment outcome: corrected feet and the ability to walk, run and play as any child should be able to.
The lightweight, child-friendly design includes easy-on, easy-off accessibility through detachable shoes and built-in stability for standing and walking.
Bracing has been one of the biggest hurdles in scaling up Ponseti treatment globally. Having an off-the-shelf, inexpensive foot abduction brace keeps the cost of treatment low. Over a ten-year period, this brace could enable as many as 1.6 million children to live active and productive lives for a relatively small investment.
You can check out and support the miraclefeet campaign here If you have any experience of using crowdfunding for research or are interested in the subject, make sure to join the discussion in our Mendeley Crowdfunding Group