miraclefeet has created a testing protocol for our new brace, which will help us gather feedback from doctors and parents about its efficacy, ease of use, comfort and parental compliance over a two-month period that started last week. This beta testing period in Nicaragua will enable doctors and clinic coordinators to assess the brace four times over the next two months - once at the first visit and then after one week, three weeks and two months.
This beta test allows us to gather data about the testing protocol itself so that we will be able streamline and standardize the process in each of the other test countries (which are the US, Brazil, India and South Africa).
In our first week of testing in Nicaragua, the most common anecdotal feedback we got from moms was that the brace is easier and faster to put on because the shoes can be put on separately from the bar and because the shoe is a traditional-style shoe. They also said that their children liked it more and they were pleased that their children could stand in it.
Last week, miraclefeet had a booth at the 11th Congress of SBOP (Brazilian Society of Pediatric Orthopedics), held in the city of Joao Pessoa in Paraiba. We had busy times at our booth, thanks to many attendees being interested in demoing the new brace (we had many wonderful comments!) and the presence of our terrific staff and partners.
The president of SBOP, Dr. Alexandre Lourenco, is a big supporter and sent many of his contacts to speak with us at the booth. We had visitors non-stop for 2 plus days!
Last week the outreach team at our partner clinic in Liberia, FACORC, had their staff (“FOOT SOLDIERS,” as they call them) visit high schools in and around Monrovia to do advocacy about clubfoot. These dedicated staff members from the Liberia Clubfoot Program are trained in disseminating health messages to people in public places. They are called FOOT SOLDIERS specifically because they walk many hours and miles on their feet to ensure that clubfoot is minimized or eradicated across Liberia. Reaching high school children ensures that more people will know that clubfoot CAN be treated.
The outreach team also made their way to the village of Totota in Bong County, about four hours from Monrovia, where they talked to parents about clubfoot.
One child with untreated bilateral clubfoot was found in the village. The child also has spinal bifida. When the baby was born, many people told the mom that the baby had been cursed with black magic and should be abandoned. Below, the FACORC team is counseling mom on how Ponseti treatment can improve the child’s well-being.
India Update: Outreach workers in Pune, the second largest city in Maharashtra, have been developing and sharing materials about clubfoot around the city. On a recent outreach trip, they met two new patients in communities - both older children who had clubfoot - whose parents did not know before then that their children could be treated.
This is a photo of one of the families whose oldest child was born with clubfoot and whose family did not know that it could be treated - he is now coming in for Ponseti treatment!
Below is a photo of CURE’s excellent outreach staff talking to staff at an NGO called DEEPGRUH Society, which works closely with preschools in the peripheries of Pune. At this visit, posters and other materials were given to 14 outreach staff at DEEPGRUH to raise awareness in these areas. This kind of community outreach is crucial, as it will allow CURE to reach more children born with clubfoot who have gone untreated.
From Vishal’s mom:
"We have decided to dedicate Vishal’s first birthday to miraclefeet.
Why miraclefeet? Here is our story, of which a few of you are already aware.
Vishal was diagnosed with bilateral clubfeet at 13 weeks of gestational age. My last scan at 37 weeks before his birth also confirmed the problem.
However, call it grace of GOD or fruition of everyone’s prayers, our son Vishal was born with healthy feet.
During the course of my pregnancy we learned a lot about clubfoot and how common it is. We would like to help miraclefeet provide treatment to children around the world so they do not have to suffer the consequences of untreated clubfoot.
Every $250 raised transforms one child’s life. In fact, miraclefeet is now supporting the treatment of 3,600 children with clubfoot in 12 countries!
Please consider donating in honor of Vishal. With your support we can truly make a difference in someone’s life.”
At miraclefeet, we love the kindness and generosity of people like Raj. Thank you so much for reaching out to miraclefeet and for sharing your story!
Barron’s just published a very poignant article by Paul Theroux on NGO work in Africa, criticizing the approach of many non-profits that are doing work there. In a follow-up blog written by Richard Morais, miraclefeet was named one of the top 5 NGOs doing things right in Africa.
We are thrilled to have earned this mention, and would like to take a moment to share how miraclefeet meets the guidelines for success in Africa, as laid out in the article:
1. Beware the panacea. Millions of dollars are wasted on overly ambitious projects claiming to be a ‘killer app.” Projects that employ tried-and-true interventions, narrower in scope, usually have far greater impact.
miraclefeet is focused only on treating clubfoot, a debilitating but treatable birth defect. All of our programming, including training, technical assistance, capacity building and community outreach, centers around the Ponseti method, the gold standard treatment for clubfoot, which is not only inexpensive but also effective in resolving 95% of cases non-surgically.
2. Demand responsible management. Ask tough questions if money is flowing into a charity, but isn’t flowing out to charitable causes.
80% of our funding goes directly towards programming. The patient records of 95% of the children we treat are contained in an on-line database so quality can be monitored and the impact on the lives of children measured.
3. Avoid duplication. Be aware of other efforts already on the ground and make sure that your program isn’t a wasteful repeat but, preferably, leverages off what’s there.
Our partners are on-the-ground clubfoot champions who know exactly what is needed where. We seek to build on existing services and develop networks with other providers to exchange ideas and identify best practices.
4. Support local, sustainable solutions. Avoid short term fixes by always seeking input from locals; plan for them to run the project on their own in the long-run.
miraclefeet-supported programs are locally-led, tailored to the needs to their communities, and leverage the existing public health system to ensure they are sustainable in the long term. Our programs include advocacy with the local government to ensure permanent change.
5. Beware of poor infrastructure projects. Make sure wells are dug where they’re actually needed, that the bridges and roads are integrated into existing plans by government or other NGOs.
miraclefeet conducts extensive fact-finding missions with local partners and stakeholders before evaluating their proposals. Each program is customized to fit the specific needs of the country.
6. Use technology intelligently. Over 90% of households across sub-Saharan Africa don’t have access to electricity for their everyday needs, let alone power for laptops. Make sure locals have the skills, resources, and necessary tools to keep tech-dependent elements of your philanthropic project running.
While our use of smart design and technology keep our costs low, the Ponseti Method itself is very low-tech and easy to replicate in any public health setting. When appropriate, we introduce technology specifically designed for low-resource environments.
7. Be prepared to face corruption. Even when a project has been granted governmental approvals, there’s no guarantee of official cooperation; corruption and regional conflicts pose considerable challenges.
Decisions about our approach are made with local partners and in a way that is very cognizant of any governmental issues within each individual country. Although our programs are conducted in public hospitals, we never send money directly to government entities. All funding is managed by a local NGO partner that provides monthly and quarterly reconciliation of spending.
8. Be culturally appropriate. Put on your anthropologist’s hat. Africans have their own process for dealing with grief and loss; Western-style grief counselors following a natural disaster or war aren’t appropriate.
miraclefeet takes our direction and guidance from our local partners. Whenever possible, we use trainers from the region to train new doctors in order to ensure programs are developed in a culturally appropriate manner.
Our work in Africa will enable us to prevent children from being permanently disabled, allowing them to walk, run, attend school, play sports and be productive members of their communities.
miraclefeet is honored to be recognized for the work we are supporting in South Africa, Botswana, Liberia, Tanzania, Zimbabwe and Namibia.
A blog post by Vincent, Sr.
"Vincent was born in December 2012 to his parents Vinnie and Dulce. Vincent’s nationality is a unique mix of 37.5% Italian, 12.5% Irish, and 50% Peruvian. As the first grandchild for both sides of the family, Vincent was born into a world of love and happiness.
Vincent was born with right unilateral clubfoot. Vincent had to have a full leg cast, changed weekly, to begin correcting the clubfoot. This lasted for the first 9 weeks of his life. Vincent received his treatment from the wonderful staff at Shriner’s Hospital in Springfield, Massachusetts. It wasn’t all bad however, as Vincent quickly learned that, since his clubfoot was slightly turned inward (prior to treatment), it was a lot easier to stick it in his mouth :-).
Vincent soon graduated into wearing what his family adopted as his “boots and bar.” The shoes, which look very similar to Birkenstocks, are angled outward and attached on the bottom of the feet to the bar. This bar allowed Vincent’s feet to be attached together while still giving him the ability to move his legs independently - something that would come in very handy once he learned to crawl. Vincent had to wear his “boots and bar” for 23 hours a day for 3 months. Since his foot responded well to these corrective measures, Vincent is now only required to wear his “boots and bar” at bed time.
A colicky baby at birth, Dulce and Vinnie considered it a victory if he slept for 1 hour straight. At age 4 months Vincent began to flourish and learned to sleep through the night. Due to the fact that Vincent sleeps so long at night, he only needs to wear his boots and bar at bed time (it covers his 10-12 hours that he is supposed to have them on).
At around 10 months, Vincent began pulling himself up and using his foot more. He is now well on his way to walking and we’ve been told his is ahead of the game when it comes to his motor skills.
Vincent is very active and keeps both his parents and grandparents on their toes. His constant motion has helped strengthen his right foot and ankle, as well as become the source of many close call heart attacks for both parents and grandparents alike
Vincent loves to sing and play guitar with his dad, as well as sing and dance with his mother. He has just learned to wave hello, and will continue staring and waving at you until you acknowledge him. Even then it may not be enough to get him to stop waving. He is not what you would call “shy.” Vincent will babble, laugh, sing and smile at anyone who will give him the time of day.
Our “Little Man” has become an inspiration for our entire family. He has overcome more in his first 11 months life than some people do in an entire life span. Vincent’s clubfoot has opened our family’s eyes to the growing problem of children across the world not having access to the same kind of treatment he did for his foot. Vincent was fortunate enough to receive some of the best treatment possible. We came across miraclefeet and saw some of the amazing things they are doing in their attempt to help children all over the world receive the same treatment Vincent had access to. Most importantly, this enables children born with clubfoot to have a childhood with one less worry, and the chance of having a few extra smiles. It is because of this that we have decided to collect donations, instead of gifts, for Vincent’s 1st birthday and all proceeds will be donated to miraclefeet with the hopes that more and more children and families can have the positive experience of our family is having because of this treatment. Every $250 we raise will transform a child’s life!
Donate now at www.miraclefeet.org and please write in “for Vincent’s first birthday” so we can thank you properly!”
~Vinnie and Dulce