miraclefeet

Early on it became very clear to us at miraclefeet that for many parents and clinicians one of the biggest hurdles to treating clubfoot on a global scale was the lack of an easy to use, low cost brace.  In order to increase access to clubfoot treatment around the world, “boots and bars” needed to be tackled head on—without an effective brace, children look at a much higher chance of relapse. 

Fortunately, miraclefeet has been able to interest a broad range of partners to tackle the problem, including Stanford University’s Hasso Platner Institute of Design who dove—feet first—into creating an affordable, accessible clubfoot brace.

An initial prototype of the Miracle Brace, much revised today 

The Need for a New Brace

In the United States, the most commonly used braces are designed for optimal ease and comfort.  Shoes fitted to the patient’s feet snap on and off the bar, allowing mom and dad to easily fit their child’s feet in the brace.  The only problem: they can cost upwards of $350.  While manageable in the United States, where insurance often covers some of the cost, for families in Ecuador, Liberia or Brazil, the cost is just too high. 

A designer named Michiel Steenbeek has attempted to combat brace cost limitations, developing a simple, inexpensive brace.  His brace was initially created for use in Uganda but is now used extensively in Africa, India and Bangladesh. 

While the brace is very simple to create, it poses challenges for clinics and parents.  A workshop must be set up to construct the braces at every location they are used.  And while Steenbeck’s braces work well, they can be difficult for parents to use—and the brace’s manual adjustments allow the mother or child to accidentally bend the brace, disrupting treatment.

To sustain clinics in eight countries (and growing)—clinics that are free to patients—miraclefeet leaders recognized quickly that the best of both braces was needed: effective and cost efficient.

“Early on, miraclefeet decided it was key to provide an off-the-shelf, standardized, low cost, easy to use and attractive brace to clinics,” said Chesca Colloredo-Mansfeld, miraclefeet executive director.

 Enter Stanford

In 2011, miraclefeet partnered with Dr. Mike North, a San Francisco designer, to begin the initial stages of working on a brace design.  North later went on to found the NGO ReAllocate, a global network of engineers, designers and entrepreneurs that inspire and aid communities through technology and innovation.

Dr. Mike North and miraclefeet test an initial brace prototype in Nicaragua, 2011.

The brace project was then picked up by Stanford’s Hasso Platner Institute of Design and the school’s class “Design for Extreme Affordability,” as recently profiled on CNN.  It is here that miraclefeet’s brace project really took off. 

While their session of “Design for Extreme Affordability” ended in June 2012, one team’s investment in the brace design project was far from over.  Graduate engineering students Jeffrey Yang and Ian Connolly received two significant grants from Stanford University to continue working on the project. 

Ian Connolly presents a Miracle Brace prototype at a Ponseti Conference in Iowa

Their team—comprised of design, medical, engineering and business students—traveled to Brazil, spending time in clinics, family homes and orthotics and prosthetics manufacturing companies to gauge the needs and resources for an innovative brace design. 

“While in Brazil, I spent a great deal of time meeting with physicians, patients and their families, and that’s when I truly began to understand the daily struggle that families go through during the bracing process,” says Yang.  “As a designer and engineer, I knew I could create a brace to improve the experience for parents and children alike while targeting a price point that would reach even those most in need.”

Jeffrey Yang discusses the Miracle Brace with miraclefeet Executive Director and clubfoot experts at a Ponseti Conference

Collaboration Across Boundaries

Since then Clarks Shoes, leading shoe manufacturer and retailer, and a significant corporate donor to miraclefeet, has gotten involved, providing an extraordinary amount of time designing and prototyping the brace.  As one of the world’s leading designers of shoes, Clarks has provided invaluable expertise ensuring that the shoe component of the brace is comfortable and meets the needs of its infant and young wearers. 

Suncast, a major plastics manufacturer in Illinois, has also been instrumental in the brace development, providing pro bono design time to optimize the brace for low cost manufacturing. 

In addition, the brace design team and miraclefeet have benefitted tremendously from pro bono services provided by intellectual property lawyer Tim Smith of King & Spalding.

miraclefeet’s brace design project has been an incredible collaboration among private, corporate, non-profit and educational partners.

What’s Next?

Thanks to the expertise of all of these partners, miraclefeet is now producing prototypes for clinical tests in the United States, Brazil, South Africa and India, countries home to miraclefeet-sponsored clinics.  Ultimately, these prototypes will help achieve the goal of a brace that costs less than $20 to manufacture, with greatly enhanced functionality and ease of use compared to braces currently employed in many developing countries.

“The treatment process for clubfoot is so straightforward that there’s really no reason any child should have to live a lifetime with such a debilitating condition” says Yang. 

miraclefeet expects to be producing these cost-efficient, user-friendly braces by the end of 2013.

Nathan was born with clubfoot.  Like in many cases, it didn’t show up in the ultrasound.  While a shock, the biggest surprise for Nathan’s family was how effective and painless clubfoot treatment has been.

Nathan’s feet at birth (Photo courtesy of F.A.L. Design)

After beginning Ponseti treatment at four weeks old and wearing his brace for 23 hours per day for three months, just like miraclefeet patients in Central and South America, Africa and Asia, Nathan’s mother Lauren happily reports that he is now “running, jumping, climbing and bouncing around like a normal two year old!”

Nathan wearing his brace

With such a successful treatment experience and joyous results, Nathan’s parents were looking for a way to give back.  After giving away Nathan’s first ‘boots and bar’ to a family in Michigan through the Clubfoot Shoe Exchange, Nathan’s family discovered miraclefeet.

And so it was that Nathan did big things on his 2^nd birthday.  In lieu of gifts, Nathan asked (through mom and dad) his friends and family to donate money to miraclefeet.  We were extremely thankful for the support and donations, 100% of which went directly to clubfoot treatment for children around the world.

Nathan with his family

Nathan and his family plan to continue this special tradition for his birthday every year.

“We are happy to help another child walk,” says Lauren.  “It is such an easy and painless treatment process that it saddens us for anyone to have to suffer from not being treated.”

Thanks Nathan!

Nathan today!

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We’d love to hear your donation stories!  Share them with us at leslie.loyd@miraclefeet.org.

 Or donate today! https://npo.networkforgood.org/Donate/Donate.aspx?npoSubscriptionId=1001406

Meet Richard, our new Director of Programs!  Although Richard joined miraclefeet only a few weeks ago, he has already hit the ground running, visiting and assessing clinics in Nicaragua and China.  With a sharp sense of humor and knack for languages, Richard will continue to expand miraclefeet’s programs and increase access to clubfoot treatment worldwide.

Where are you from originally/where did you grow up?

I was born in Pittsburgh, Pennsylvania. My parents still live in western Pennsylvania.

How did you get started with miraclefeet?

I had been working overseas for more than sixteen years and was anxious to find US-based work that continued to actively engage me on international development issues.

How have your first few weeks been with miraclefeet?

Terrific! It is very rewarding work and a great team of colleagues. I also really enjoy working with partners in a range of countries, some of which I already know very well and others which are new to me. 

What do you love about your job?

While I am proud of all of the many overseas jobs that I have had to date, this is the first time that I have had such regular contact with and exposure to actual beneficiaries. The activities that we support through our partners really do make such a positive difference in the lives of the children we assist and their families. I love to follow their stories and see the photographic evidence of how they are progressing in life.  

What are some of your favorite hobbies outside of work?

I love photography, reading, working out at the gym, finding new restaurants, theater, movies – lots of things! 

Where is your favorite place you have traveled?

I think it is fair to say that I enjoy travel as a general principle and I have never been to a place where I did not enjoy myself, but I have a special fondness for Brazil. It’s hard to explain – I just really enjoy the people and the culture. 

What is your favorite movie?

I love movies of all kinds, and am the sort of person who basically ends up seeing everything eventually…? “What is my FAVORITE movie” – hmmmmm, that is a very hard question – I definitely like twistier movies, so maybe “Mulholland Drive” by David Lynch, if I had to choose? Ask me tomorrow and I will tell you something else! 

Read any good books lately?

I am an avid and eclectic reader. I tend to read up on whatever country I am working on or in (I read everything I could on the Democratic Republic of the Congo and Africa’s Great Lakes region when I was there last year, just as I had read everything on Liberia when I was there before that.) I definitely get on kicks with authors – the most recent was Gore Vidal, whose “Julian” I found amazing. I also really enjoyed his “Narratives of Empire,” although I must say that “Burr” and “Lincoln” really stand out among the seven books in the series.

“I feel good here because the doctor is very patient with my son.  That’s so comforting for me as a mother, to see that they treat my child with affection and love.”  -Bruce’s mom

Support from parents is so important to treating clubfoot.  While our partnering doctors and nurses thoroughly and efficiently treat patients, the real work happens at home.

Kids must return for new casts each week.

Once casting is completed, for three months they need to wear their braces 23 hours per day.  Then braces are worn only during naps and at night until they age of four or five. 

These children are often very young, maybe even only a few months.  So much of the responsibility falls on mom and dad to make sure their kids are completing treatment and wearing their braces.

And Bruce, a 7 month old patient in treatment at a miraclefeet partner clinic in Leon, Nicaragua, is very lucky to have parents who exemplify this commitment.  Since discovering miraclefeet’s clinic, Bruce and his parents have not missed one appointment.  Bruce’s mother and father come to the clinic with him every Wednesday and stay at his side while he gets casted, sharing the love that only a parent can give.

And Bruce’s doctor is committed too.  Dr. Balladares in Nicaragua even came in to the clinic on his week of vacation to change casts for his Ponseti patients.  Like Bruce’s parents, Dr. Balladares goes above and beyond to ensure treatment is successful.  “I feel good here because the doctor is very patient with my son.  That’s so comforting for me as a mother, to see that they treat my child with affection and love,” said Bruce’s mom. 

With the devotion of his parents and doctor, Bruce will be walking, running and playing someday very soon.  

miraclefeet co-founder Bridget with the managing director of CURE International India Trust 

We often share stories and updates about the incredible children, parents, nurses and doctors we have met across the world.  And we’ve even introduced you to several members of our office.  But who is at work behind-the-scenes, actively setting a meaningful course for the future of clubfoot treatment?

Meet the men and women behind miraclefeet’s Board of Directors.

THE BEGINNING

Twelve years ago, Roger Berman and Bridget Ryan Berman were worried when their son was born with clubfoot.  Like many in the United States and around the world, they weren’t familiar with the Ponseti Method, at the time not widely known or practiced. 

Fortunately, the Bermans quickly learned of the non-surgical Ponseti Method, pioneered by Dr. Ignacio Ponseti of the University of Iowa.  With the careful attention of his doctor Joshua Hyman, newly trained in the Ponseti Method, the Berman’s infant son was successfully treated for clubfoot.  Today, he walks, runs, plays multiple sports and is a healthy, active twelve-year old boy.

Roger and Bridget felt lucky that their child had access to safe, affordable and very effective treatment, and they asked themselves—why shouldn’t every child have access to the Ponseti Method?  And their doctor Dr. Hyman wondered the same thing. 

So together Roger, a veteran of the textile and manufacturing industries and current supply chain consultant for U.S. and Chinese retail companies; Bridget, CEO of Victoria’s Secret Direct; Josh Hyman, a pediatric orthopedic surgeon at Columbia Presbyterian Hospital, and Dr. Jose Morcuende, orthopedic surgeon and leading clubfoot expert from the University of Iowa, created miraclefeet. They were joined by Rodger Raderman, whose daughter was also successfully treated with the Ponseti Method.  Rodger remains an advisor to the organization. 

miraclefeet Co-founder Richard visiting the Wadia clinic in India

TODAY 

As miraclefeet has grown, so has the Board of Directors. 

Chesca Colloredo-Mansfeld, who learned of the Ponseti Method while working at the Univeristy of Iowa, home of Dr. Ponseti, had also become interested in the issue of increasing access to treatment in developing countries.  She connected with the group just as the miraclefeet plan was hatched and helped develop the implementation strategy.  Chesca joined the Board when she became the miraclefeet Executive Director in 2011.  Jennifer Tye, who lives in San Francisco and serves as the Associate Director of Genentech

His mother traveled five hours by foot and crowded bus, skipping meals and fighting nausea, all to get her son treatment.

Wilder, now three years old, was born with bilateral clubfoot.  As an infant, he was casted to correct clubfoot in his hometown.  But there were no results, as is often the case when children are improperly casted.  Wilder’s mother was hesitant to try treatment again.

But her friend convinced her to give treatment one more chance.  With her friend’s encouragement, Wilder’s mother agreed to travel, for the first time in her life, to Nicaragua’s capital, to consult with a doctor professionally trained in the Ponseti Method. 

Upon seeing the improvement in Wilder’s feet, his mother was determined to complete treatment, meaning weekly visits to Managua.  It also meant severe nausea for Wilder’s mother, who struggled with the long, cramped bus rides from San Lorenzo-Boaca to Managua.

And it meant sacrificing for her son’s well-being.  On one occasion when Dr. Sequeira, a partnering practitioner with miraclefeet, finished casting Wilder, his mother suddenly fainted.  Only then did she admit that she had not eaten anything that week, so that she could afford transportation for her son to visit the clubfoot clinic.

These are the sacrifices the devoted, caring parents make—and this is how important clubfoot treatment is.  And for Wilder’s mother, it is all worth it watch her son joyfully walk towards her on beautifully corrected feet. 

You feel an itch in your throat or a pain in an ankle.  You trek to the emergency room or make an appointment at the doctor’s office, perhaps sitting for an extended time in a waiting room filled with magazines and fish tanks.  Such is the medical treatment process for many in the United States.

But what is this same process like for people in Liberia or Mexico or even Peru?  Sadly, too often the frustrations we face are minor obstacles compared to the long and frustrating process of receiving health care in many parts of the world.

Zoraida’s experience as a sixteen-year old Peruvian suffering from severe clubfoot is just one example of how difficult it is to navigate the public health system.  miraclefeet first met Zoraida through a caring group of donors—Triangle United Soccer Association’s U-14 women’s team.  The team traveled to Peru to work alongside and empower young girls, one of whom was Zoraida.  Inspired to help her get treatment, miraclefeet has taken a special interest in Zoraida’s case.*

And since miraclefeet does not operate clinics in Peru, it hasn’t been easy.  Previously unable to afford medical care, when Zoraida’s parents received funds from the Triangle United soccer team, they were initially concerned that treatment wasn’t Zoraida’s best option.  Clubfoot treatment inappropriately applied can hurt rather than help—one reason trainings and clinic support are so important.  But miraclefeet arranged for Zoraida to meet with Peru’s premiere surgeon, and her parents understood this was their daughter’s greatest hope to ever walk.  Zoraida’s school principal even flew to Lima with Zoraida and her mother.

Zoraida suffers from severe clubfoot.

But the obstacles would not abate.  First she was told she needed a blood test.  The next day a TB test.  Then an x-ray.  All of which she must leave her hostel at 3am in order to get a spot in line.

What Zoraida’s family thought would take three days, to arrive, go into surgery, and be discharged, turned into more than a one month stay in Peru’s capital, far from Zoraida’s home.  Families who travel for health care often struggle to find extended accommodations, regularly living in cramped rooms with inadequate resources, and Zoraida’s experiences were no exception.  For a family who had never been to the city and whose livelihood requires attention at home, the experience was overwhelming.  Had it not been for Zoraida’s principal and her help, the family would have likely given up.

Zoraida’s experiences are troubling.  Even with concentrated attention from an educator, a non-profit and a nationally renowned surgeon, and in a country with a public health system like Peru, Zoraida was denied quick treatment.  Imagine her chances without this help.  In countries without established clubfoot clinics, this imaginary scenario is too often reality.

That is why we feel our work is so important.  miraclefeet is committed to making treatment readily available, with streamlined procedures and reliable schedules.  By partnering with public hospitals and local doctors, miraclefeet is bringing affordable clinics to countries around the world.  Without these clinics in Liberia…India…Mexico…Nicaragua, patients are left to fight for treatment in a crowded system.  We are devoted to ensuring that no one gets lost in this system and every child has access to clubfoot treatment.  

“It’s difficult to convey the emotion one feels when you see a child who has suffered from clubfoot walk normally. To see the look of hope and reassurance on mom’s, dad’s, aunty’s, uncle’s or even grandmother’s face when they start to see results is something you get addicted to and to be a part of making that happen is just incredible. I foresee miraclefeet and STEPS making magic happen!”

            -Gaby, STEPS Coordinator

One of the ways miraclefeet effectively and sustainably provides clubfoot treatment around the world is by collaborating with incredible in-country partners.  While our supporters constantly see the tremendous effects of these partners’ work through our photos and stories, they often don’t know about the people and organization’s behind the incredible transformations happening in clubfoot patients from Brazil to Botswana.

STEPS South Africa

So we want to introduce you to STEPS Southern Africa, miraclefeet’s partner in South Africa and Botswana.  STEPS was founded in 2005 by Karen Moss, a mother whose child was born with clubfoot.  After Karen’s child was successfully treated with the Ponseti Method, she wanted create STEPS to facilitate formal introduction and training of the Ponseti Method.

Partnership 

And by partnering with miraclefeet, STEPS has been able to work steadily toward that goal.  “The support we get from the partnership has helped us to build the infrastructure we need to support clinics,” says Karen.  “We have already directly affected patients’ lives at clinics by supplying braces where before the brace supply was erratic.”

Partnering with miraclefeet also gives STEPS the freedom to focus on what really matters—the children.  “It is amazing to have the level of support we have from miraclefeet.  A lot of NGO’s are so heavily reliant on fundraising and when that is the focus, it can often take away from what is really important, getting the word, and in our case treatment and support, out there,” says Gaby, STEP’s Coordinator.

Since 2005, Karen and STEPS have come along way.  Here is a brief timeline of how together, miraclefeet and STEPS have helped make Ponseti the gold-standard of treatment for clubfoot in South Africa.

2003

Karen’s son Alex is born.

2006

• STEP SA hosts its first training to introduce the Ponseti Method to the South African Orthopedics community.

2007

• After the first training was a huge success, STEPS hosts its second training to gain consensus from doctors that the Ponset Method is the proper treatment for clubfoot.

Since these trainings, the Ponseti Method has been integrated into the medical school curriculum across South Africa.

2009

• Karen first learned about miraclefeet as it was first forming.

2011

• Karen and miraclefeet Executive Director Chesca began discussing a partnership between STEPS and miraclefeet.

2012

• miraclefeet and STEPS SA partnership was finalized!

STEPS SA held a training that included practitioners from neighboring Mozambique, Botswana, and Namibia.  In these three southern African countries, the Ponseti Method has yet to be widely taught or accepted.

What does the future hold for miraclefeet and STEPS? 

By the end of 2013, miraclefeet and STEPS SA plan to support Ponseti treatment in over 8 public hospitals.  “We are helping to expand treatment in outlying regions of South Africa by partnering with clinics that serve the poorest communities, and we are launching the Ponseti Method in Botswana and Namibia this year, and also plan to work with Tanzanian and Swaziland clinics,” says Karen.  The program in Botswana will initially start at Princess Marina Hospital, the largest public hospital in the capital city Gaberone.

With miraclefeet’s support, Karen has long term goals for STEPS too.  “In 5 years, we would like to be a regional (sub-Saharan) powerhouse, educating, informing and supporting clinics, doctors and families so that clubfoot patients are receiving the best possible care.”

The day every child has treatment

And ultimately, STEPS and miraclefeet have the same ultimate wish.  “In 10 years, we hope to have completely eradicated neglected clubfoot or poor treatment of clubfoot in the entire region so that every child born with clubfoot is assured of a life without disability,” says Karen.

Learn more about STEPS and miraclefeet’s work in South Africa and Botswana:

South Africa:  http://www.miraclefeet.org/projects/SouthAfrica.php

Botswana:  http://www.miraclefeet.org/projects/Botswana.php

Back in July of 2012, miraclefeet and Crocs partnered to ensure children recovering from clubfoot treatment in Nicaragua had proper footwear. 

Now, Crocs is at it again, and this time in Liberia!

Pictured below are some familiar faces (including Youkoi) in their brand new Crocs.  

Crocs Cares’ generous donation of their trademark rubber shoes to children in miraclefeet’s clinics is so very important, for a number of reasons.

Many patients do not have adequate footwear, imperative to ensuring continued health.  Walking to school or work is a continued difficulty, all the more discouraging now that the physical act of walking is possible thanks to completed Ponseti treatment.

Often, once the feet seem completely corrected, patients will neglect to come back to the clinic.  But in reality it is so important that children continue wearing a brace for 3-4 years and come in for regular check-ups.

But with Crocs’ help, patients receive free shoes AND parents have an added incentive to bring their children back to the clinic.

A huge thank you to Crocs and the FACORC clinic for all of the amazing work they are doing.

Six months ago, miraclefeet received an incredible grant from Ronald McDonald House Charities. We planned to use this $138,000 to establish clubfoot clinics in Ecuador, providing free Ponseti treatment to the nearly 3,000 children living with talipes in the country.

And now those plans are becoming reality.

Chesca and Lauren traveled to Ecuador this month to establish relationships with hospitals, nonprofits and non-governmental organizations in Quito, Ecuador’s capital, and Guayaquil, Ecuador’s most populous city.With 300 new children born with clubfoot every year in Ecuador, it’s imperative to provide efficient and affordable treatment in-country.

A patient sleeps as his casts are finished by PIA-Ecuador Member Dr. Geovanny OIeas.

miraclefeet will launch pilot programs in the main pediatric hospitals of Quito and Guayaquil, building on the miraclefeet vision to partner with local orthopedic surgeons and establish clinics within the existing public health system.The effectiveness and sustainability of these pilot programs will be ensured in a number of key ways:

1.    Beyond the physical components essential to a new clubfoot clinic—braces, plaster, clinic support—a pilot program is all about education and outreach.miraclefeet will educate pediatricians, OBGYNs and midwives about the low-cost and surgery-free Ponseti Method; teach parents how to ensure their children’s treatment is successful; and support Ponseti doctors beyond Quito and Guayaquil.

To ensure the success of programs in Ecudaor, miraclefeet will work alongside local    partners, including:

• Fundacion Vida Saludable (a maternal and child health NGO in Ecuador)
• Ponseti International Association – Ecuador Chapter
• Fundacion Hermano Miguel
• Junta de Beneficiencia de Guayaquil

2.    To ensure the sustainability of the program, braces will be made IN Ecuador at prosthetic and orthotics workshops within Fundacion Hermano Miguel, a not-for-profit rehab center in Quito, and Hospital de Ninos Roberto Gilbert, the Junta de Beneficienca de Guayaquil supported pediatric hospital.

3.    miraclefeet will organize hospital-specific trainings. Leading Latin American experts from Ponseti International Association and physicians from Project Perfect World will examine and treat complex issues at the hospitals, like relapses, older patients and clubfoot associated with other syndromes or neurological disorders, including arthrogryposes, spina bifida, Edward’s Syndrome (Trisomy 18) and cerebral palsy.

4.    Along with the University of Iowa, miraclefeet developed a National Ecuadorian Ponseti Database as part of the International Clubfoot Registry.

miraclefeet Executive Director Chesca Colloredo-Mansfeld helps a father soak off his child’s casts at Hospital Baca Ortiz, Ecuador’s principle pediatric hospital.

We are just beginning but our partners in Ecuador and everyone at miraclefeet are excited to take this first step of many.