Reflections from Barcelona: International Clubfoot Symposium 2014
The miraclefeet team recently had the privilege of attending the International Clubfoot Symposium in Barcelona, a biennial event organized by Ponseti International Association. This event brings together extraordinary people who share the goal of helping children born with clubfoot around the world: parents, physicians, healthcare workers, non-profits and donors. For those of us who work full-time in this field is it wonderfully energizing to be surrounded by others who care as deeply as we do about preventing the unnecessary disability caused by untreated clubfoot.
While the formal presentations were interesting and informative, as is often the case, it is what happened informally that was so exciting. Our team was in constant motion all day long:
huddling over a cup of coffee with a partner to discuss how a new program is going in Tanzania
gathering all the Mexican representatives together over lunch to brainstorm about how to take a two-year program to the next level of becoming a fully-fledged national movement
having ad hoc conversations over the afternoon cookie break to connect with a doctor who wants to start a clubfoot program in Bolivia
putting the miraclefeet brace into the hands of some of the world’s leading experts on clubfoot bracing to get immediate feedback and reactions
meeting other non-profits over a few drinks to brainstorm how we can share materials, collaborating and coordinating to avoid duplication of effort
hearing from clubfoot parents about what it took for them to make sure their children received the treatment they needed
enjoying a wonderful dinner of pinchos and Spanish wine with experienced and dedicated people from all over Africa, Latin America and Asia, each bringing their own stories of successes and challenges in trying to promote clubfoot.
This event provided so much opportunity to learn, to share and to develop new ideas and ways to work together. But even more importantly, being with others who care so deeply about the same issue is tremendously energizing. Listening to our partners describe the progress they have made thanks in part to miraclefeet support validates what we strive to do each day. Hearing people praise our approach, and reach out to us for help, reinforces that the model we have come up with makes sense to an external audience. Hearing people ask how they can get our brace for use in their clinics as soon as possible, makes the huge effort that has gone into brace development so worthwhile. We all came back feeling even more fired up about what we do than ever.
Many thanks to all our incredible partners (over 25 of you!), who came from as far as Brazil, the Philippines and Tanzania to be in Barcelona with us. And thank you to Ponseti International for bringing us all together for 4 days of great networking, learning and thought-provoking dialogue. The clubfoot world is made up of some of the most dedicated, passionate and caring people I have ever had the pleasure of working with and I am enormously grateful that I have the opportunity to learn from and work with this impressive group of people.
Update on miraclefeet clubfoot brace testing in South Africa.
We have been testing our new @miraclefeet brace in South Africa over the last three weeks and will continue to test there for the coming month. Six children have been wearing the brace at night and coming back to the clinic in Cape Town for regular parent interviews and check-ups. Our partner clinics there tell us that children, parents and doctors alike are pleased with the brace.
Here are some photos of two of the children testing it out:
This is Soleiman and his father, excited about the new brace and booties.
This is Synoya, a sweet, wise and fun boy who loves the brace.
We will continue to report back from our testing sites and thank you to our partners @STEPS-SA for testing the brace there!
Moira just graduated from high school in the US and is currently walking the Camino de Santiago in France and Spain with her mom while raising money for miraclefeet!
"We started at St Jean Pied a Port in the Pyrenees in France. After a long hike up I was able to admire a fantastic view.
The last couple of days we have been walking through wine country. Lots of beautiful grape and olive groves surrounding small towns.
Last night, in the city of Los Arcos, we went to a cello concert in a 13th century church. The cellist is walking the Camino with his cello on his back and playing in churches along the way, while making a movie.
We’ve been talking to our fellow pilgrims along the way about their reasons for walking the Camino and ours, miraclefeet.
We’re already almost the end of our first leg on the Camino de Santiago! After 6 days and almost 150km we have one more day of walking before we meet up with our bikes in Logroňo. The walk so far has been amazing: beautiful countryside, interesting people and great food (but sore feet!). Every day we seem to see something and someone different.”
We are honored that Moira chose to walk for miraclefeet!
Here is a family photo of little Jatu with her mother, Kema, her twin sister, and her brother Amos. Jatu and her twin are 1 year and 7 months. Her twin sister does not have clubfoot. They are the youngest of 5 children.
Jatu’s mother Kema is blind. Understanding the difficulties of persons…
From Diagnosis to Treatment: A Mother's Journey with Clubfoot
I’ll never forget that phone call. If there’s one number you don’t want to pop up on your caller ID a few hours after you return home from a routine 20 week ultrasound, it’s the doctor’s office. My stomach sank as I picked up the phone. After some initial introductions, the genetic counselor on the other end said kindly but decisively: “It looks like your baby has clubfoot. We would like you to come back tomorrow morning for another ultrasound to confirm the diagnosis.” I, like most parents who have received and will receive similar phone calls, had never heard of clubfoot. It sounded vaguely medieval. Certainly not something I would ever have to worry about. I was devastated and scared.
The diagnosis of bilateral clubfeet was confirmed the following day. Luckily, it appeared isolated, and while that was a relief, I still cried for much of the following days. Finding out something is wrong with your child before he is even born is a humbling experience, and I confess that I did not take it well. Through the tears, however, I decided to learn everything I could about clubfoot, and as I learned about the Ponseti method, my sadness was replaced with hope and then, to my great surprise, relief. Not only is clubfoot treatable, but the treatment is non-surgical and highly successful. This wasn’t such a big deal after all, I told myself. A few days after the news sank in and I had done my research, I had prenatal consultations set up with the top orthopedists in the New York metropolitan area who specialized in the Ponseti method. Even at that difficult time, my good fortune of having access to these preeminent doctors did not escape me.
Six days after my son Leo was born, we put him in the car and brought him to the Hospital for Special Surgery, where he received his first of eight weekly casts to correct his severe case. Following his tenotomy and last casts which were on for three weeks, he was fitted for his first brace, which he wore for 23 hours a day for three months. He will wear the brace at night until he is 5 years old. We continue to take Leo in for regular checkups, but those days of weekly trips to the hospital are nothing but a distant memory, indistinguishable from all of the other rituals of newborn care and clouded by the sleep-deprived haze that afflicts new mothers everywhere.
Today, one would never know that Leo was born with this birth defect, and I feel an overwhelming amount of gratitude for the late Dr. Ponseti and for Leo’s excellent orthopedist when I look at his little feet today. If it weren’t for them, he wouldn’t be able to kick a soccer ball or run around after his big brother, which happen to be two of his most favorite activities. It is through this gratitude that I decided to seek out miraclefeet.
While researching clubfoot during my pregnancy, I was astonished to learn that 1 out of every 750 children born worldwide are affected. Of course, I live in America, where we largely have access to treatment for conditions like clubfoot. It seems like nobody is born with clubfoot here because nearly everyone is treated for it during infancy or childhood. Such is not the case in the developing world, where access to this relatively simple and inexpensive treatment is scarce. This reality seems particularly unjust. After all, unlike so many of the world’s problems, this one is entirely fixable.
The eradication of clubfoot through access to treatment is miraclefeet’s mission, and I knew I wanted to play a small part in helping miraclefeet by donating Leo’s first set of brace shoes after he outgrew them. When I learned a bit more about the organization, I inquired about becoming involved in their junior board, which is comprised of volunteers. I had the good fortune of inquiring at a time when miraclefeet was looking to organize a fundraising and awareness-raising event in New York, and I was thrilled to help put together a wonderful event that took place just last month. I hope I’ll be able to help out again in the future and in the meantime, I will continue to donate Leo’s shoes as he outgrows them.
On this Mother’s Day and as a mother of a child born with clubfoot, I would like to dedicate this post to the mothers (as well as the fathers) of all the children who are treated at miraclefeet-supported clinics across the world. Even with miraclefeet’s wonderful work partnering with local clubfoot clinics to provide access to treatment, I know that many of the families at these clinics do not have the luxury of simply strapping their children into a car seat and driving 20 minutes to get treatment, as I did when Leo was a baby. Many of them make sacrifices and endure hardships of their own to ensure their children can be treated, sometimes even moving their families and uprooting their lives, just so they can be closer to the clinics. Thank you to miraclefeet for working with local healthcare providers to increase access to clubfoot treatment for these families. And thank you to the parents who faithfully bring their children to these clinics weekly for castings and then regularly for brace check-ups. Together, miraclefeet’s mission comes closer to being realized. And as you, the parents, know, your children will be eternally grateful for everything you have done for them. Happy Mother’s Day to you!
Jennifer Krakowsky is a full-time mom and part-time attorney who enjoys photography and practicing yoga whenever she can. Prior to having children, she practiced law full-time as a litigator in New York. She is a dedicated and passionate volunteer at miraclefeet. She and her husband Josh have two boys - a 4-year-old and a 19-month-old. They reside in Westchester, NY. Jen can be reached at jenkrakowsky at gmail.com.
Michelle contacted us recently because she has a sweet young friend named Rogan who was born with complex clubfoot. He is now three and Michelle has been a part of his journey to walking, which was not uncomplicated. Above is a link to her blog and fundraiser (for @miraclefeet!). She is already a third of the way to her goal!
Testing the miraclefeet clubfoot brace in Nicaragua
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.
Sharing the new miraclefeet clubfoot brace in Brazil
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.
Outreach: Finding Children with Untreated Clubfoot in Maharashtra
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.
Our partners at CURE Clubfoot Rajasthan recently celebrated the first birthday of baby Priyanka who is receiving treatment at their clinic. Priyanka started her casting in March of 2013 and got her braces that June. On a recent follow-up visit, her parents shared that they did not have any money to celebrate her upcoming birthday. The CURE social worker asked if they could throw her a party at the clinic and the staff all agreed that it was a great idea. The doctor who had applied her casts came and cut the cake while holding her hand. The clinic staff gifted baby Priyanka with a walker. Her parents were thrilled and it was so rewarding to offer this simple but important gift to the family and to Priyanka. Here she is with her first birthday cake.
The brace costs about $20, potentially making it a disruptive technology in the developing world.
miraclefeet is getting both national and international attention for the innovative clubfoot brace design project we are spearheading. Clubfoot is one of the most common birth defects worldwide, affecting one in 750 kids (including here in the US). The difference is, however, that it never goes untreated here. For example, Mia Hamm and Kristi Yamaguchi were both born with clubfoot and became world famous athletes. This method is 95% effective and inexpensive, making it scalable for the developing world. The brace video included in the article above has now gotten over 16,000 views. We could not be more excited about getting the word out!
Vishal's 1st birthday: A fundraiser for miraclefeet!
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!
miraclefeet named among “Five of the Best” NGOs in Africa
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, miraclefeetwas 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.
Vincent's first birthday: A fundraiser for clubfoot and miraclefeet!
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!”
Soccer and clubfoot - raising awareness with Ali Krieger!
Have you been following miraclefeet’s exciting partnership with soccer.com and Ali Krieger? Clubfoot impacts one in 750 children and is one of the most common birth defects worldwide. miraclefeet.org is working to eradicate untreated clubfoot across the world. There is a natural fit between clubfoot and sports because treating clubfoot helps to ensure an active life. Young athletes who we talk to really get that. Famous soccer players like Mia Hamm and Steven Gerrard were born with clubfoot. It is completely fixable 95% of the time with proper treatment!
Kids born with clubfoot who may never have walked can go on to live active, productive lives. The Ponseti Method for which we advocate is non-surgical and costs a total of $250. Here are some players in the Prince William Courage club in Virginia practicing in miraclefeet training socks. The Courage is Ali’s home team!
miraclefeet hires new Latin America Program Manager!
Please join us in welcoming Ilana Dubester to the miraclefeet team. Ilana has over 18 years of experience in non-profit leadership in the areas of program development, implementation, capacity building, fundraising, public policy and advocacy. She has served in the field of philanthropy and has relationships with many US and Mexico-based philanthropic foundations. She has been devoted to advancing the rights of Hispanic/Latino families in North Carolina and increasing capacity of organizations to achieve greater results. Her former organizations include Hispanics in Philanthropy, Hispanic Liaison of Chatham County and The Center for What Works. Currently Ilana serves on the boards of the Z. Smith Reynolds Foundation and the NC Rural and Economic Development Center. Ilana is originally from Brazil and is fluent in English, Spanish as well as her native Portuguese. Look forward to Ilana’s program updates from the field in Latin America soon!
miraclefeet has hired Ryan Calauor as its Program Manager for Asia. Ryan is a physical therapist who has developed and managed community-based rehabilitation projects for persons with disability in his home country, the Philippines, as well in Papua New Guinea, Tajikistan and Ethiopia with Voluntary Service Overseas and Handicap International. Ryan has direct experience with the Ponseti Method and with the development of clubfoot clinics through his work in Papua New Guinea with a British organization called Voluntary Service Overseas.
Welcome, Ryan! Look for updates from Ryan on our Asia program support soon.
Brian's half-marathon: raising money for clubfoot!
Here is how it went. Brian has raised $1,600 for miraclefeet. Thanks so much for your support and interest along the way! Brian, you are amazing.
"I got up early after not sleeping well - I usually don’t the night before a race, I think because I worry I’ll oversleep - got dressed, and headed downtown. I had carbed up the day before, and felt good. Fortunately, the rain held off, and as I came downtown, the sun was even starting to peek out a bit. It was a bit humid, though, and probably 10 degrees warmer than I would have liked it. There was a good turnout for the race, and at 8 AM, they started the first corral. Being slower, I was toward the back, in corral 7 out of 8.
The first three miles through downtown Cleveland felt good, then it was down the hill on St. Clair into the Flats, across the Center Street Swing Bridge over the Cuyahoga river, then up the Main Ave. hill, where I finally slowed to a walk for part of it, around mile 4.
We continued west down Detroit Ave to the Gordon Square area, where it was fun to see my high school alma mater’s cheerleaders out in force, cheering us on. I shouted “Go Eagles” as I approached, which got them even more fired up. We turned south at West 65th, then back east onto Franklin Blvd, then south on West 25th street, past the venerable West Side Market on one side and Great Lakes Brewing on the other, taking us past the halfway point. I was still (mostly) running, taking the occasional 20 or 30 steps of walking as my thighs started feeling the distance and reporting back.
There were several bands and DJs along the course, and as we headed southeast on Abbey Ave toward the Tremont loop section of the race, we past my favorite, DJ Kishka, wearing his old man hat and fake beard, playing classic polkas by Frankie Yankovic. You can’t be anything but happy when polka music is playing!
At this point, I was really starting to ache, feeling it in my thighs and feet. I had one of my Gu energy packs as I ran down West 11th. I ran through the sprinkler at the water stop at Lincoln Park, which helped.
It was a very packed course - even up to about the 10 or 11 mile point, I was kind of fighting the crowds and hitting slowdown points where a wall of people running side by side were running slower than I was, and had to dance around to get past them.
I twisted my left ankle on a combination of cobblestones, loose sticks and leaves going down the steep narrow hill on Castle Ave, and again on the crumbling road by Clark Fields (the City of Cleveland really failed here - a quick afternoon of a road crew and some hot patch could have REALLY helped all of us, and done something that needed doing anyways).
Checking the published splits, I was doing well up even around the 10 mile point. But that was the big hill at West 7th and Starkeweather, and I think it was around there that the bottoms of my feet started hurting. At that point, I slowed to a walk up the hill, and found myself walking for probably most of the rest of the course. If I could have continued running even just at a normal 5K training pace that I ran at every day, I would have been maybe 10 minutes faster.
At mile 12, in the middle of the mile long Detroit Superior Bridge, a stage was set up and a local Irish band, Craic, was playing one of my favorite Flogging Molly songs. I picked up the pace and ran singing past them.
And of course, a half mile before the finish line, my son started texting me about when am I was going to be done so I could pick him up from a sleepover he had with his buddy! Nothing like trying to pick up the pace to finish strong, while texting your kid that it will be another hour at least!
I emptied the tanks for the last quarter mile, and ended up finishing with a time of 2 hours, 48 minutes, 59 seconds. That’s 12 minutes slower than my personal best, and seven seconds slower than my half marathon time for the Cleveland Marathon this past spring. I had hoped to do better, but still, I ran a pretty strong race, and felt good about it. Not a personal best, but then again, the personal best was from New Orleans, where the elevation variation for the entire marathon course was about 12 feet. So I think I did really well, considering the hills, the heat, the humidity, and the 10 pounds I’ve put back on since then.
I can’t say enough about how well this race was run - the Rock N Roll people really have their acts together! Lots of bands (good bands!) throughout the course, along with high school cheer squads. There were lots of water stations, and towards the end as it heated up, a medical tent started using up their ice by passing handfuls of it out. Even starting in corral 7 of 8, when I finished, everything was still up, there was lots of food and drink (bananas, power bars, pretzels, Gatorade, chocolate milk) AND wet towels soaked in ice water to help cool down.
The music headliner, Gavin DeGraw, didn’t start playing until 10:45, so I managed to catch that, and they had a merchandise booth at the end, along with food trucks (though I didn’t bring my wallet, so no souvenir pint mug for me.) And it seemed like many who finished before me stayed around for the music and the beer tent and maybe even the casino. I really hope they do this one again next year
Thanks so much to everyone for your support! Even though the race is over, you can still donate to miraclefeet via my page, and help give children the gift of walking.
Dillon's 6th birthday: a fundraiser for clubfoot treatment at miraclefeet!
Dillon asked his mom to dedicate his birthday this year to miraclefeet after reading about us through a local fundraising promotion. What a thoughtful young man! Here is Dillon’s story, from his mom:
"This is my son Dillon. He is a twin and his twin brother’s name is Preston. We found out Dillon was going to be born with clubfoot at a prenatal ultrasound and were well-prepared to deal with it when he was born. We were fortunate to have a very well-trained and experienced physician trained in the Ponseti Method in our area. He explained the entire process to us before Dillon was born. Dillon’s left foot was casted the day after he was born.
Here are some photos of Dillon wearing his brace, which we named his “magic shoes.” He wore the brace daily for the first 6 months and then every night for 2 years.
His foot is now totally functional and he is a great athlete. We are so very grateful for this very effective treatment!
We would like to help miraclefeet provide this relatively simple and highly effective therapy to children around the world so they do not have to suffer the consequences of untreated clubfoot.”
Donate now in honor of Dillon here: http://www.miraclefeet.org/. You can note that it is in his honor easily at the bottom of the donation page (under “if you have a special purpose for your donation, please let us know [and write in Dillon’s name and even a personal message]”). To send in your donation instead, mail a check to: miraclefeet, 605 West Main Street, Suite 107, Carrboro, NC 27510.
miraclefeet partners on clubfoot awareness at 1st Annual Delhi Charity Run
miraclefeet co-sponsored a huge charity event in India last week along with CURE International India Trust, our partner organization there. It was the first ever race of its kind in Delhi. The event was called Footsteps4Good and its proceeds will benefit 17 different NGOs working in India.
Check out some photos from this event below, which more than 5,000 people ran and walked. What an inspiring day! Big thanks for Santosh George, Executive Director for CURE International India Trust, for getting miraclefeet involved in this terrific event.
CURE clubfoot clinic staff members at the race.
Runners waiting to start.
John Abraham of Bollywood fame is Cure’s new spokesperson, helping build awareness about clubfoot across India.
Brian's update: Half-marathon for miraclefeet & clubfoot!
Brian’s half marathon is less than a week away. Here is his last blog before the big day. Brian was born with clubfoot and he is running to help others walk:
"The Cleveland Rock ‘n’ Roll Half Marathon is less than a week away. I was due to run a 3 mile run this past Saturday, and then a 12 mile run on Sunday. For some reason, my heart, and my body, were not into it this weekend, and I spent the entire weekend just resting quietly at home. I felt a twinge of guilt, but then again, I have trained better and more diligently this time than I have for either of my full marathons. And I had a great 11 mile run the prior weekend wearing my new shoes, one in which had I pushed just a little more, I would have set a new personal best time. I hope that this weekend I have the same or better run.
Physically, I’m in pretty good shape. The new Hoka One shoes take a lot of the load off of my ankles and calves, and I am finding that the big muscles in my thighs are working more, which is a good thing. I wish I had a few more weeks to train in them. I think the extra work in the upper legs would really increase my odds for a personal best. I haven’t lost as much weight as I would have hoped either, but I have lost some, which is better than none.
Mentally, a little less. I’ve been having focus issues while running, and have had trouble getting in and staying in “the zone.” I’ve found that I perform best when I can put my head into that space where I don’t necessarily notice what is going on with my body, and just let my body do what I have trained for. I’m starting to “psych up” for the run now, and have found a couple of albums (oops, showing my age there!) that will help power me through what seems to be my difficult spot, miles 7 to 10.
I have two more days of training runs left, tapering runs, less distance and time than the runs of the past three weeks.
Then, two days of rest.
Saturday, the day before, I’ll head downtown and get a peek at the newly remodeled Cleveland Medical Mart and Convention Center, where the Health and Fitness Expo is being held, and pick up my race number, running chip and goodie bag, checking out the various vendors. After that, I’m thinking a good “carbing up” dinner of potato and cheese pierogi, cabbage and noodles, and kielbasa at Sokolowski’s. Then, early to bed.
And Sunday morning, time to fly. Time to beat: 2 hours, 37 minutes, 49 seconds. They are expecting between 7,000 and 8,000 runners. The weather forecast looks to be a high of 73 degrees, with a 70% chance of thunderstorms. Hopefully, the rain will hold off some during the race.
Wish me luck! I will do my best.
I hope you will all do your best as well. There’s still time to help me reach my other goal of raising $2500 for miraclefeet, and, in doing so, help give others the gift of walking! In these last few days, please help, and give what you can. Every gift counts! We have already raised enough to cure four children in developing countries of clubfoot thanks to you!”
Brian's half-marathon training update: a miraclefeet fundraiser!
Brian is now only one month away from running his half marathon. Here is his latest blog post about running a “warm up” half this past weekend. Go, Brian: you are truly an inspiration!
"I was due to run a Sunday training of 10 miles. I am now four weeks out from the Rock and Roll Half Marathon, and I saw that, on my 10 miler Sunday, another half marathon, the River Run Half Marathon, was scheduled. Its course crosses the Cleveland Metroparks, running through a section known as the "Emerald Necklace," a chain of parks and green spaces that circles metropolitan Cleveland. I’d run this same half marathon about five or six years ago, and remember running it very slowly. I figured maybe I should try again, as a prelude to the Rock N Roll Half Marathon, to see how I was doing. So, on a lark, I went to the registration packet pick-up the day before and signed up.
“It’s only 3.1 miles more than what I’m supposed to run anyway. What’s an extra 5K?” I thought.
Quite a lot, apparently.
I arrived out at Wallace Lake in Berea, Ohio (home of the Cleveland Browns’ training camp) around 6:30 AM. I thought the race started at 7:30 - turns out it started at 8 AM, so I was a little early. It was cloudy and gray, with patchy fog through the valley, and noticeably cooler than it had been over the past couple days. This actually worked in my favor, allowing me a nice slow warm-up and the hope of staying cool through the run.
The race started, and we were off. I felt really good for the first three miles. The race is mainly downhill, from Berea, OH north through the parkway, along the Rocky River, into Lakewood, Ohio, almost to Lake Erie. However, since it’s through a river valley, the road snakes left and right, following the river. In many places, the banking left and right of the road was extremely noticeable, feeling like you were running on the side of a hill. I really started noticing it in my ankles. I slowed down to a walk to catch my breath around mile five, then ran until mile 8.
At mile 8, I hit a wall. I’m not sure what happened, but I suddenly lost all drive and motivation. I wanted to stop right there and sit down and cry. My feet hurt, I was tired, I was drenched in sweat. There were no spectators other than birds and a few deer, squirrels and raccoons. A lot of negativity swirled in my head. I was ready to quit. I slowed to a walk and posted a note on Facebook about it. Fortunately, a few friends posted some inspiration, and I was able to pick up the pace. After a slow three miles, I started up again, and managed to finish with a not too horrible time. It wasn’t the best of runs, but I persevered, and finished strong, sprinting the last tenth of a mile.
I didn’t give up on this run, and with a month left until the Rock N Roll Half Marathon, I’m not giving up on my training, trying to improve my time and lose a little more weight. I’m also not giving up on trying to hit my goal of raising $2,500 for miraclefeet. That will give TEN kids born with clubfoot the life changing gift of walking, and running!
So I would ask that you give up, just a little bit, to help me reach this goal. Give up a couple of bigger lunches for an apple a couple of days. Give up that fancy Starbucks latte, just for a week. Give up that movie night out with a giant soda and popcorn, just once. Take what you would have spent and use it to help give others the gift of walking. Thank you all so much for your support.”
Meet Laurie - miraclefeet's Newest Endurance Team Member!
This is Laurie!
Laurie is forty-five years old and was born with clubfoot. After she was born, the doctors told her mother that she would never walk. Her mother never believed that, and she never let Laurie believe that either. Fortunately, Laurie proved them wrong. In high school, she started running varsity track. Recently she has competed in several sprint triathlons, 5K’s, 10K’s, half-marathons, and even a Spartan Race. Her true passion is to inspire others by showing them that, no matter what the obstacle is, hard work and determination will always help you overcome. Laurie has done many races with “MyTeam Triumph – Massachusetts,” a team that pushes children with disabilities who are in wheelchairs in road races. In March 2013, Laurie pushed a child through a half-marathon! Laurie has been searching for a way to help children and adults who still suffer from clubfoot. Laurie came across miraclefeet earlier this year and was thrilled at the opportunity to share her story and to tell those who suffer, “yes, you can!” For her next race, Laurie will be fundraising for miraclefeet.
Aubrey's First Birthday Hoedown: a fundraiser for miraclefeet
Aubrey is a typical one-year-old. She loves her baby dolls as much as her brother’s trucks. Everyone who meets her says she is the sweetest, happiest and cuddliest baby they know. Here is more about Aubrey and her first birthday event this weekend, which her parents have so kindly dedicated as a fundraiser for miraclefeet:
"In honor of sweet little Aubrey’s first birthday and her big brother Parker’s 3rd birthday (pictured below), we are throwing a HOEDOWN FOR A HOPE TO STEP to help other children born with clubfoot. Aubrey’s condition was diagnosed via ultrasound. We were really shocked but felt so much better once we realized it was 100% treatable. For that reason, we want to give other parents that same piece of mind and their child the ability to run, walk, dance and play without any restriction.
Above: Aubrey’s big brother, Parker.
Aubrey received her first cast at just 5 days old. Our biggest fear throughout the whole process was she would feel pain or discomfort. When she woke up from her procedure, she was just her usual sweet & happy self. She came home and slept through the night like nothing happened! After an additional 2 weeks in a cast, it was finally time to transition to her new “boots.” We thought for sure we would have multiple sleepless nights, but once again, we were wrong! They did not bother her a bit! Now our biggest worry is how we we will keep her still long enough to get her boots on at night!
Today our happy, smiley, cuddly little girl is almost walking! We are so thankful for modern day medicine and insurance and hope the contributions made in her and Parker’s name bring more “BOOTS for babies.” YEE-HAW!”
As of today, Aubrey’s friends and family have already raised $160 to help give the gift of walking to children born with clubfoot in the developing world!
Director of Programs at miraclefeet attends Congress of Orthopedics and Traumatology in Quito
Richard Hoffman, miraclefeet’s Director of Programs, recently participated in the XXXIX Ecuadorean Congress of Orthopedics and Traumatology in Quito, Ecuador from August 21 to 23, 2013. Besides providing a chance for Richard to meet with doctors from four miraclefeet-assisted hospitals in Ecuador that are assisting patients through the Ponseti method, it was an excellent opportunity for us to meet with well-known and highly regarded Ponseti practitioners from around the Latin America region.
While in Quito, Richard also met with the director and staff of the Fundación Hermano Miguel, a local NGO that provides direct assistance to physically disabled children and adults from Ecuador and from surrounding Andean countries. The Fundación Hermano Miguel is currently producing and distributing a low-cost, good quality brace and shoe set with miraclefeet assistance that will benefit many children who are receiving Ponseti.
Pictured above (L to R): Dr. Cesar Quiroga (Hospital Roberto GIlbert Elizalde/ Guayaquil); Dr. Bravo; Dr. Jefferson Quiñones Leon (Hospital Franciso Icaza Bustamente/Guayaquil) and Dr. Johnny Melgar (Hospital Roberto GIlbert Elizalde/ Guayaquil)
This photo was taken during one session of the Congress where participants received a practical Ponseti refresher training conducted by Dr. José Morcuende (Ponseti International Association), Dra. Erika Arana (Guadalajara, Mexico) and Dra. Dalia Sepúlveda (Chile). miraclefeet was happy to be a part of this important professional training and networking event.
Clubfoot Survivor Turned Tennis Athlete and Entreprenuer Joins miraclefeet Board of Directors
We are proud to announce that Kunal Premnarayen, a clubfoot survivor and former Wake Forest University tennis player turned successful entrepreneur in India, has joined miraclefeet's board of directors. Kunal’s story of having prevailed over this disability to become a star athlete is one that will inspire children and parents all over the world. “We are thrilled that Kunal has agreed to lend his support to miraclefeet by joining our board,” said Chesca Colloredo-Mansfeld, executive director of miraclefeet. “His personal experience with clubfoot in India, combined with his passionate desire to spread awareness about the disability, and his success as both an athlete and a business person, provides the miraclefeet board of directors with an extremely valuable additional perspective.”
Kunal was treated with a method similar to Ponseti when he was born in India in 1977. He has clear and vivid memories of wearing braces and steel boots to correct his clubfoot until he was nearly eight years old, but this did not stop him from becoming an athlete. Kunal credits much of this athletic success to his 92 year old grandfather/mentor, a tennis professional in his own right who played in both Wimbledon and the French Open and became the number two tennis player in India. He helped Kunal become the 5th highest ranked tennis player in India, despite being born with this disability. Because of his talent, Kunal had the opportunity to move to Florida to attend tennis academies in high school. From there, he was offered a scholarship at Wake Forest University in Winston-Salem, North Carolina, where he was a star tennis player from 1994 – 1997.
When asked about his own experience with clubfoot, Kunal is impressively positive: “Becoming an athlete got me through the tough times. Sports are life-changing for someone who has had a hard youth or who has survived bullying because of a disability. For me, being an athlete was the way for me to find my personality and stand up to people. Truly, I may have gone into a shell if I had not become an athlete.” He elaborated about his decision to join the miraclefeet board, “When I learned about miraclefeet, I didn’t just want to be a donor, although I knew that was important. I wanted to make an even more notable difference – I want to look back at my life and feel that I have done something that is very satisfying and that helps many people.” In fact, Kunal and his wife Kavita asked their wedding guests to donate to CURE International India and miraclefeet in lieu of giving wedding gifts when they were married in 2011, thereby raising nearly $10,000 for the organizations collectively.
Kunal says he has thrived because of the support of many people over his lifetime. He recently asked his mom if she and his dad ever thought he would live a normal life when he was born with severe bilateral clubfoot. She wasn’t sure, but she pushed through her fear, trusted their doctor and relied on her faith. When his clubfoot started getting better, that fear went away. He also talks about his wife as an inspiration, “She left a very successful corporate career in New York to move here with me and run an NGO that provided education to women in the slums of Mumbai. It is one thing to give your money, but it is truly another to dedicate your whole life to something you believe in. She shares my passion for miraclefeet, and we look forward to increasing access to treatment and awareness about clubfoot across India.”
Kunal recently attended a renovation celebration for a miraclefeet-supported clubfoot clinic in Mumbai at Wadia Hospital (see below), which we blogged about last month. He said this about that event, “It really touched me because I had gone through this treatment myself. I met every single child and parent before I left there that day because the parents wanted to know how I had fared after my own treatment and what they should do to make things better for their kids. I reminded them not to stop treatment just when they think things are going okay – clubfoot can reverse and it is very important to be consistent with treatment.” He said to the crowd, “I was born with both of my feet facing the other way, and yet I became a highly successful athlete. Never lose hope.”
miraclefeet has been able to raise over $3 million since it started operating three years ago, and is now supporting clubfoot clinics in 11 countries worldwide. Much of this funding has come from individuals and foundations attracted to the very compelling prospect of transforming the life of a child forever with a simple, inexpensive non-surgical treatment.
“miraclefeet has achieved remarkable success with a very small staff and board. The time is right for miraclefeet to add capacity and personal expertise as we continue to grow at a rapid rate. My own son, who was born with clubfoot, now plays tennis, and sees Kunal as one of his inspirations,” said Roger Berman, co-founder and chair of the miraclefeet board of directors.
Update: Brian's half-marathon training - a miraclefeet fundraiser!
The past couple weeks, I’ve slowly increased my training efforts, and am proud to say that I’ve continued to adhere to my training plan. The typical runner’s aches and pains are there, and are there more often, but nothing I haven’t dealt with before (or will deal with again.) I’ve had both good runs and “somewhat less than good” runs, times where I have not met my performance expectations, but the takeaway here is that I have kept at it, not slacked, not quit. I’ve also gotten better (a little) with my dieting, and managed to lose almost four pounds! This week brings more challenges there as well, with Little Italy’s Feast of the Assumption, a German Oktoberfest, and a halupki festival, all in a single week. I will do my best to eat wisely (though pizza and gelato, schnitzel and strudel, and halupki are awfully tempting…)
I FINALLY ordered some new running shoes today! Unfortunately, they are on back order and won’t be making it to my feet for about a week. That means the shorter runs during the week will have to be on the treadmill at work, where the “ground” is a bit kinder to my feet than the pavement outside. This weekend’s eight mile long run, however, could be a challenge.
Speaking of challenges, last week, I opted to run my seven-mile-long run through part of the Cleveland Rock ‘n’ Roll Half Marathon course. The Tremont neighborhood in Cleveland is noted for being the locale for several movies such as “The Deer Hunter” and is the location of the house where Ralphie lived in “A Christmas Story.” It is also full of excellent restaurants, including Iron Chef Michael Symon’s Lolita (which I loved even before his Iron Chef notoriety.) What I didn’t realize until last week was just how hilly the neighborhood could be! A steep downhill takes you running through Clark Field, a green park situated next to a railyard and the Cuyahoga River. Then, a steep uphill up West 7th Street, to a gentler uphill on Starkweather Ave., past the onion-domed St. Theodosius Russian Orthodox Church. Then, after a flat surface down Professor Ave, you go downhill on Literary Rd, then back uphill on West 7th, past the delicious Sokolowski’s, then level once again. At least until you hit the gentle yet constant uphill then downhill of the 3/4 mile long Lorain-Carnegie Bridge (photo above)!
Overall, I’m pleased that I have risen to the training challenge and stuck to my guns, even on days where I was tired, cranky, or just feeling lazy. I’m planning on continuing forward to reach for my goal of a new personal best for a half marathon. Won’t you help me reach my other goal of raising $2,500 for miraclefeet, and in doing so, help give others the gift of walking? We are already a third of the way there, having raised $800. Thank you! Together, we can all make a huge difference for kids with clubfoot!
Mustapha is eight years old, and, when his family came to our partner clinic in Liberia, they had been living in a refugee camp in Guinea since his birth. They had been actively seeking treatment for his clubfoot for years but had never been able to attain it. One day, Mustapha’s aunt in Liberia heard about our partner clinic, FACORC, on a local radio station. She immediately called Mustapha’s parents in Guinea and encouraged them to come back to Liberia for treatment. His parents risked their place in the refugee camp to come back to Liberia and seek help at FACORC. Here he is with his mom several weeks into treatment and before his tenotomy.
Even though his treatment started relatively late in life, he is recovering nicely and his parents have been elated to watch the transformation of his feet. Here he is after his tenotomy with our Africa program manager, physical therapist Jen Everhart.
We will update you on Mustapha’s progress again soon. It is truly an honor to help people such as his family everyday.
Update: Brian's miraclefeet Rock n' Roll Marathon Training!
From Brian: “It’s been a fairly productive first two weeks of training for the Cleveland Rock ‘n’ Roll Half Marathon. I have managed to adhere to my training schedule every day so far, and even extend some of the runs.
Unfortunately, I can’t say the same about my diet. I wanted to eat lighter and healthier, but a couple trips to Sokolowski’s University Inn, a Cleveland institution, threw in a (delicious) sidetrack. Pierogi in butter, potato pancakes, stuffed cabbage and good Czech beer may excite my taste buds, but definitely slow my pace! I will get back on track and hopefully lose a few pounds in the coming weeks.
The increased training effort has begun to manifest as achy hips and sore feet, so I’m beginning to look around for some new running shoes. My last pair did not fare so well in the wear department. Even with the corrective surgery I’ve had, my right foot still supinates (rolls out) noticeably, wearing the outer edge of my shoes. Usually, the right shoe wears evenly to a slope from the big toe to pinkie toe. My most recent right shoe wore worse than usual, with the inner half holding up, and the outer half wearing to almost a quarter circle. Every step resulted in an obvious rolling of my foot, which put a lot of strain and pain on my outer calf muscle.
On Saturday, July 20, I ran in the Winking Lizard Shot in the Dark 4 mile race wearing my new miraclefeet T-shirt (thanks, guys!). Fortunately, the heat here in Cleveland broke the day before, so we were not racing in 95 degrees. It was an evening race, so it was still around 80 degrees when we started out. I ran the first mile and a half at much faster than my personal record 5K speed, almost 7 MPH, and then wilted, slowing to a walk, and alternated walking and running the rest of the race. The takeaway - pace yourself!
Approaching Mile 3, I had someone pace next to me and ask, “are your feet hurting now?” ”Yes,” I responded, thinking it an unusual question. My feet always hurt at about this point - don’t everyone’s? I then realized that maybe he figured I had a club foot, since I was wearing the miraclefeet T-shirt (and also may have a bit of a limping gait when I run.) Just as I made that connection, a woman ran past, gave me a thumbs up, and said that her sister had just adopted a little girl with clubfoot. So while I didn’t raise any money with this race, I believe I was at least able to raise some awareness. I’ll be sure to wear my miraclefeet T-shirt at any other races I run, as well as during some of my training runs!”
Parent Text Support Program Kicks Off in Nicaragua
Last week we held the first meeting for our new parent text messaging program, Step by Step – Paso a Paso - at Hospital Velez Paiz in Managua, Nicaragua. Thirteen families are participating in the test of the system and we held a focus group in order to get their input on its initial design. The families are very excited about testing the program. Many have expressed feeling isolated and alone during parts of their child’s clubfoot treatment and they are pleased that they and other parents are now receiving support and information to help them navigate their child’s long-term treatment. Our miraclefeet program manager, Lauren Wall, is working with Mackensie Yore of Stanford University, who designed the project, and NC State University student Taylor Craig, the miraclefeet intern who has been managing the project. Here are a few quotes about the project from the parents who participated and some photos of the focus group:
- “When I [first] saw her feet, I never thought this would be possible. Now they are so straight.”
- “Thank you for doing this. Before, there was no information about clubfoot.”
- “When can we do this again?”
- “The text messages were a great motivation for me, to give me encouragement to keep going.”
- “I would tell [other] new moms with children with clubfoot, be strong!”
We are thrilled to measure the success of this new component of the parent support program and to help bring it to our partner clinics across the world.
This is a photo of beautiful baby Emma. Our partner clinic in Oaxaca is successfully treating Emma’s clubfoot with the Ponseti Method. Prior to accessing treatment there, the family had been taking her to a different clinic that was using insufficient casting. Her mom was quite distraught because, after several months, Emma’s condition was not improving. She heard about our partner clinic and decided to take a chance on it, even though it takes her 6-8 hours each way to get to the clinic from their house. Emma’s mom has noted that it was definitely worth it. They are already seeing dramatic improvement in Emma’s clubfoot and are very happy about her treatment. She is so proud of her girl!
And below is another photo of Emma with Dra. Ariathna Hernandez. We are lucky to be able to help kids like Emma access such excellent Ponseti-trained doctors to treat their clubfoot!
Brian Paganelli contacted miraclefeet because he was born with clubfoot and is now a successful runner. Here is his story and a link to his new crowd rise fundraising page. Go, Brian!
I was born with a clubfoot, which was surgically repaired when I was six years old. I took up running in 2006 to live a more active lifestyle and lose weight. I started small, built up to 5K races, then 10K races, then half marathons. In 2012 I finished my first marathon in New Orleans, and in May 2013 I finished the Cleveland marathon.
I am fortunate to be able to walk, run, and even get into distance running, despite being born with this disability. I came across the miraclefeet organization recently, and wanted to help others overcome their disability as well. I am running the Cleveland Rock ‘n’ Roll Half Marathon on October 6, 2013 on behalf of miraclefeet.
Please donate! Donate what you can! Even a dollar will help! Just $250 will provide essential medical treatment for a child with club feet. Help me raise $2,500 to change the lives of ten kids forever.
Renovated Clubfoot Clinic Opens in Maharashtra, India
miraclefeet recently funded the renovation of a space at Wadia Women’s and Children’s Hospital, now the largest clubfoot centre in Maharashtra State, India, and the inauguration event for the clinic was held yesterday. miraclefeet board member Kunal Premnarayen, his wife Kavita and his mother attended as representatives of miraclefeet (all three of whom are pictured at bottom left, below).
Pictured are also several family members of children with clubfoot, who are holding signs thanking the clinic staff. The lead counselor for the Maharastra State program, Vipulata Agale, is on the far right holding the miraclefeet sign. Many thanks to program coordinator Sachin Pol who organized the event and oversaw the renovation project. Many thanks also to Dr. Alaric Aroojis, Medical Director of the Maharashtra Clubfoot Program, for supporting the renovation of the new space and the work of the centre. We were thrilled that Santosh George, Director of CURE International India, was in attendance, along with Mr. Anami Roy, former Director General of Police for Maharashtra State. Congratulations on opening this important centre in Maharashtra!
Pictured in the new Nodal Centre above are clubfoot patients and their mothers. Also pictured: miraclefeet board member Kunal Premnarayen, his wife Kavita, and his mother (on left), as well as Vipulata Agale, the lead clubfoot counselor for the Maharastra State program (on far right).
STEPS Southern Africa held its first Ponseti training in Gaborone on June 13th and 14th, officially bringing the Ponseti method to Botswana for the first time. The training began on the morning of the 13th at the United States Center for Disease Control with remarks from both the American ambassador to Botswana and the Botswana Minister of Public Health, and continued with lectures on the Ponseti method from Dr. Greg Firth, Dr. Jacques Du Toit, and Dr. Tony Robertson, all of South Africa.
The afternoon of the 13th the training moved over to the Princess Marina hospital, where delegates had the opportunity to practice the casting method on rubber training models.
On the 14th, the delegates had the opportunity to observe and help cast live children with Dr. Firth, Dr. Du Toit and Dr. Robertson, and even a select few got the chance to watch Dr. Du Toit perform a live tenotomy.
The Ponseti method got off to a great start in Botswana!
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.
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.
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.
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 2nd 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.”
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?
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
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.