July 20, 2023
Over three years ago, a group of us gathered in Orlando to build on the decades of experience in helping children and families devastated by the two most common brain conditions in the world, hydrocephalus and spina bifida.
We knew what we needed to do. Our mandate was clear. Protect as many children from the complications of hydrocephalus and spina bifida as we could. We would do this through training surgeons in the Warf method, the ETV/CPC procedure pioneered by Dr. Benjamin Warf over 20 years ago in Uganda. We would work to prevent the most common causes of hydrocephalus in children, newborn infections and spina bifida.
We knew where we needed to be. Studies have shown that children born to impoverished families living close to the equator are the most vulnerable. Lower income countries in Africa, Southeast Asia and Latin America.
We knew the impact we could have. Over half of all children with hydrocephalus can be shunt-free, and, through Dr. Steve Schiff’s work, we have a proven system for identifying the organisms responsible for causing the majority of hydrocephalus cases, accelerating prevention. Collectively, our experiences in Uganda and at leading academic centers in the United States taught us that early interventions, avoiding shunts when possible and instilling hope in mothers significantly increases the odds these little children will survive and thrive.
Around the world, over half a million babies will be born with or acquire hydrocephalus and spina bifida this year. The vast majority live in those countries described above. There is a sense of urgency. Most will not live past their 2nd birthday unless someone helps.
Three years ago today we launched NeuroKids to go after hydrocephalus and spina bifida. We now have eight training and treatment centers around the world, with four more to be launched before the end of the year. Five surgeons have been trained. Seven are actively being mentored, with four more coming on in the next few months.
By the end of the year, over 500 children will receive life-saving surgery. Thanks to you, we are well on our way to 20 centers by 2025, saving the lives of over 1,000 children every year. A special thanks to our friends at Ohana One and TeleVu for the remote presence technology that enables NeuroKids to scale training and support across continents and time zones, and to Karl Storz for providing affordable flexible endoscopy equipment vital to these surgeries.
A very special thanks to you for funding us. Without your generous support, none of this would be possible. Children are alive today because you gave.
