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!

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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.

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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.

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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!

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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! 

http://www.miraclefeet.org

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.

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CURE clubfoot clinic staff members at the race.

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Runners waiting to start.

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John Abraham of Bollywood fame is Cure’s new spokesperson, helping build awareness about clubfoot across India.

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We love the miraclefeet t-shirts!

http://www.miraclefeet.org 

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.

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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.”

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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.

Meet miraclefeet’s Board of Directors

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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. 

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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

Meet the Staff: miraclefeet interns

miraclefeet wouldn’t be the same without its amazing interns.  It’s time you get to know them!

Joss Warren, Intern, Indian Programs: University of North Carolina

Career Goal:  I want to become a doctor and hopefully work overseas in some kind of medical and public health capacity.

Best part about interning with miraclefeet: My favorite part of interning with miraclefeet is how challenging the work is. I am constantly given tasks that are outside of my comfort zone and help to increase my range of abilities within the workplace. I am also learning a lot about what it takes to effectively manage a non profit organization, which is something that is relevant to my hopeful career path.

What’s Next: After college I am hoping to go to medical school and pursue a graduate degree in public health.

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Mary Charles Hale, Intern, Social Media: North Carolina State University

Career Goal: In the most general answer possible, I hope to have a career that makes me happy and has a positive impact on the world.  I love to write, I love to travel, and I love to laugh, so a career that combined all three would be great!  I would be head over heels to end up in an organization like miraclefeet.  Either that or become stage manager of Good Morning America.

Best part about interning with miraclefeetI have two favorite parts—I couldn’t pick just one!  First, the people.  Chesca, Lauren and Leslie have all been so welcoming and are a really fun, caring and committed group of people to work with.  The stories I have heard and the children I have learned about since interning with miraclefeet are the other best part.  miraclefeet is doing incredible work around the world and getting to share stories like Jorgito’s and Melvin’s and Marli’s is a special job.

What’s Next: This year I plan on playing a lot of trivia, watching the Wolfpack win an NCAA Basketball Championship and finishing my senior year as an English major at NC State University.

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Taylor Craig, Intern, Research and Outcomes: North Carolina State University

Career Goal: To work for an organization that promotes global health care and addresses health care needs around the world. 

Best part about interning for miraclefeet: Being a part of a passionate team of professionals that work to improve the lives and create positive outcomes for families in low-income countries. 

Whats next: Continue to raise awareness of the importance of health care around the world, continue to gain experience through internships and traveling before going onto graduate school for a Masters in Public Health. 

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                                                        Joss in India
miraclefeet intern, Joss Warren, has spent the last several weeks with our partners at CURE India.   Unfortunately summers in India can be very hot and Joss has had to adjust to the 115 degree weather, a tough transition from a Canadian native!  Joss has had the opportunity to see many of the miraclefeet clinics in action, as well as provide some input on how things can run a little bit more smoothly.  
Last week, Joss went to see clubfoot clinics in Parbhani and Nashik.  They are in Northeastern India and much smaller than the ever-busy hospitals Joss is used to seeing in Delhi.  This area is historically underserved, and the Directors of Health have started a poster campaign to help bring in patients that have not yet been treated.  This campaign will also serve to educate the public on what clubfoot is, and if they have, or know a child with clubfoot they have a place to bring them to be treated.  Joss was very impressed with the hospitality that the doctors showed to each patient, as well as, the care and patience the doctor’s had to make sure that the children got the best care possible.  If the casting is done hastily, due to too many patients and not enough staff, children can have some scarring.  Joss was happy to report, that he found no scars on patients’ feet in Parbhani and Nahik.  
Joss has also been working with the counselors in Mumbai on ensuring that patients get into the patient database efficiently and effectively.  All miraclefeet patients are entered into a global database so we can ensure that each child is getting the gold standard of care.  Joss is training the counselors on how to use the database so the clinics may run smoother.  We are very pleased with the work Joss has done to help these clinics see more patients, more effectively and more efficiently.  Thank you Joss!

                                                        Joss in India

miraclefeet intern, Joss Warren, has spent the last several weeks with our partners at CURE India.  Unfortunately summers in India can be very hot and Joss has had to adjust to the 115 degree weather, a tough transition from a Canadian native!  Joss has had the opportunity to see many of the miraclefeet clinics in action, as well as provide some input on how things can run a little bit more smoothly. 

Last week, Joss went to see clubfoot clinics in Parbhani and Nashik.  They are in Northeastern India and much smaller than the ever-busy hospitals Joss is used to seeing in Delhi.  This area is historically underserved, and the Directors of Health have started a poster campaign to help bring in patients that have not yet been treated.  This campaign will also serve to educate the public on what clubfoot is, and if they have, or know a child with clubfoot they have a place to bring them to be treated.  Joss was very impressed with the hospitality that the doctors showed to each patient, as well as, the care and patience the doctor’s had to make sure that the children got the best care possible.  If the casting is done hastily, due to too many patients and not enough staff, children can have some scarring.  Joss was happy to report, that he found no scars on patients’ feet in Parbhani and Nahik. 

Joss has also been working with the counselors in Mumbai on ensuring that patients get into the patient database efficiently and effectively.  All miraclefeet patients are entered into a global database so we can ensure that each child is getting the gold standard of care.  Joss is training the counselors on how to use the database so the clinics may run smoother.  We are very pleased with the work Joss has done to help these clinics see more patients, more effectively and more efficiently.  Thank you Joss!

Our partner in India, Santosh, told us this story about a miraclefeet patient. 
Rehmat Mohammad and Shakila after their marriage migrated to Mumbai from a remote village in Uttar Pradesh in search of some job opportunities to sustain their life. Since they couldn’t find enough resource to support their lives in Mumbai city, they opted to further move to a place near Thane, which is an emerging satellite industrial township adjacent to Mumbai.
 Rahmat works as a weaver whereas Shakila apart from being a busy home maker works making ‘decoration articles’ at home.
 Their first four children born were girls. Rehmat and Shkila wanted to keep trying until they had a boy. Their fifth child was a boy but was born with hearing and speech impairment.  They decided to go for one more child and this time they got a boy with clubfoot, Juaid Rehmat. Thinking Juaid Rehmat could not lead a normal life, they decided to go for another child and this seventh child is now 5 months old.
 This family initially took Juaid Rehmat Ansari to a hospital in Mumbai for clubfoot treatment and couldn’t successfully complete the treatment. But they came to know that miraclefeet, in partnership with CURE, has established a weekly clubfoot clinic at the nearest government/public district hospital in Bhivandi and they resumed non-surgical treatment. Life of this nine-member family in a one-room house is a challenge but they all are happy that little Rehmat is saved from life time disability.
 There are over 230 children like Rehmat who are successfully getting free treatment in 12 weekly clubfoot clinics located at public hospitals in Maharashtra, a state that has 113 M population and has an estimate of ten children born with clubfoot every day!

Our partner in India, Santosh, told us this story about a miraclefeet patient. 

Rehmat Mohammad and Shakila after their marriage migrated to Mumbai from a remote village in Uttar Pradesh in search of some job opportunities to sustain their life. Since they couldn’t find enough resource to support their lives in Mumbai city, they opted to further move to a place near Thane, which is an emerging satellite industrial township adjacent to Mumbai.

 Rahmat works as a weaver whereas Shakila apart from being a busy home maker works making ‘decoration articles’ at home.

 Their first four children born were girls. Rehmat and Shkila wanted to keep trying until they had a boy. Their fifth child was a boy but was born with hearing and speech impairment.  They decided to go for one more child and this time they got a boy with clubfoot, Juaid Rehmat. Thinking Juaid Rehmat could not lead a normal life, they decided to go for another child and this seventh child is now 5 months old.

 This family initially took Juaid Rehmat Ansari to a hospital in Mumbai for clubfoot treatment and couldn’t successfully complete the treatment. But they came to know that miraclefeet, in partnership with CURE, has established a weekly clubfoot clinic at the nearest government/public district hospital in Bhivandi and they resumed non-surgical treatment. Life of this nine-member family in a one-room house is a challenge but they all are happy that little Rehmat is saved from life time disability.

 There are over 230 children like Rehmat who are successfully getting free treatment in 12 weekly clubfoot clinics located at public hospitals in Maharashtra, a state that has 113 M population and has an estimate of ten children born with clubfoot every day!

                                             Clarks in India
A representative from Clarks Shoes, leading shoe manufacturer and retailer, is visiting our Mumbai clinics this week to learn more about clubfoot treatment in India.  He visited this family who have a young child with clubfoot being treated in a miraclefeet-funded clinic.  As you can see from the photo, they live in a basic house and have a lot of children to take care of. In an area where parents often have trouble providing basic necessities for children that are perfectly healthy, having a child with a disability can be devastating.  Clubfoot often goes untreated because families simply cannot afford treatment.  The child becomes a social and economic burden.  Often he or she cannot attend school because they cannot get there. The child is not valued because he or she can only perform basic chores and has little hope of being a contributing member of society.  In addition, families who have children with disabilities can be ostracized because their child is considered “cursed,” so these children are hidden away and spend much of their time in solitude.  
Providing free treatment to children like this one, gives families a renewed hope that their child will lead healthy and productive lives.  His parents are proud to show him off to the community and look forward to their child’s future.   miraclefeet’s work goes well beyond just treating clubfoot.  We restore dignity, hope and transform the trajectory of the life of a child and often the entire family.

                                             Clarks in India

A representative from Clarks Shoes, leading shoe manufacturer and retailer, is visiting our Mumbai clinics this week to learn more about clubfoot treatment in India.  He visited this family who have a young child with clubfoot being treated in a miraclefeet-funded clinic.  As you can see from the photo, they live in a basic house and have a lot of children to take care of. In an area where parents often have trouble providing basic necessities for children that are perfectly healthy, having a child with a disability can be devastating.  Clubfoot often goes untreated because families simply cannot afford treatment.  The child becomes a social and economic burden.  Often he or she cannot attend school because they cannot get there. The child is not valued because he or she can only perform basic chores and has little hope of being a contributing member of society.  In addition, families who have children with disabilities can be ostracized because their child is considered “cursed,” so these children are hidden away and spend much of their time in solitude. 

Providing free treatment to children like this one, gives families a renewed hope that their child will lead healthy and productive lives.  His parents are proud to show him off to the community and look forward to their child’s future.   miraclefeet’s work goes well beyond just treating clubfoot.  We restore dignity, hope and transform the trajectory of the life of a child and often the entire family.

Importance of free clubfoot treatment in Maharashtra

A recently published article shed light about girls in Maharashtra State in India being named Nakushi, which means “unwanted” in a local language, Marathi.  A district health officer said “So strong is the desire for a male child that these girls are called Nakushi, without any proper naming ceremony.”

For girls with clubfoot born into these situations, their futures can be grim.  Many of the 222 girls named Nakushi in Maharashtra were born into poor families.  For poor families, paying for clubfoot treatment is impossible.  If left untreated, clubfoot can prevent children from walking and thus, going to school.  They risk living their lives in shame and humiliation.

miraclefeet has launched a new clubfoot initiative in Maharashtra State India. miraclefeet targeted Maharashtra due to the very large population living in Mumbai as well the other major cities, and the very limited availability of proper clubfoot treatment in public hospitals. miraclefeet is working in Maharashtra through a joint venture with CURE International India Trust. The goal in Maharashtra is to initially establish clubfoot clinics in 7 public hospitals (or hospitals serving low income populations for free) with the expectation that over 250 children will be enrolled in the first 6 months.

To learn more about our program in Maharasthra, our other programs around the world, and how to help, visit our website.