Following a Dream While Helping Others

We’ve all heard stories about the relentless will of everyday man and the powerful achievements it can bring to life. The Children’s Brain Institute (CBI) at Miami Children’s Hospital (MCH) is an example of such an achievement, and thanks to the dedication of volunteer fundraisers who believed in their dream and followed it to fruition, the Children’s Brain Institute is a beacon for parents nationwide, and even internationally, looking for a world-class facility dedicated to the treatment of pediatric neurological diseases and disorders.

It all began about five years ago, when a small group of south Florida parents joined forces to travel an unknown road with no roadmap toward a mission. The members of the group shared a common pain, each having had a young child who suffered from a brain tumor. Initially, they envisioned a place where children with neurological diseases could find the help they so desperately needed. The dream eventually materialized into the Children’s Brain Trust, an arm of the Miami Children’s Hospital Foundation.

“One of the reasons we put a lot of energy into this cause is because we didn’t want to see other parents and their children going through the pain we and our young children went through,” says Paul Hale, founder and a volunteer of the Children’s Brain Trust. “We wanted to make a difference by making the difficult journey a little easier to walk. We believed we could do this by assuring there was a comprehensive pediatric brain tumor program in existence down here in southern Florida.”

(l-r) Dr. Glenn Morrison, neurosurgeon at CBI, Robin Reiter, president at Miami Children’s Hospital Foundation and Paul Hale, founder of the Children’s Brain Trust.

The mission of the Trust is to create awareness and provide financial support to the clinical and research-based initiatives established by the multidisciplinary clinical programs of the Children’s Brain Institute, Hale explains. “The result will be safer and more effective treatments, increased survival rates, and improved quality of life for children afflicted with neurological disorders and diseases such as brain tumors, epilepsy, autism, spina bifida, attention deficit disorder and spasticity,” he says.

It goes without saying that even the slightest abnormality to a child’s brain can have devastating consequences – not only to the child but to the child’s family and friends. Furthermore, the comprehensive and multi-disciplined treatment required for a child could be a lot different from that required by an adult. And sometimes that treatment is not always available at the pediatric level. “This is why the main focus at the Children’s Brain Institute is on the application and development of cutting-edge treatments and technologies that can integrate research initiatives from among the different facets of neuroscience to foster team member collaboration through multidisciplinary clinical programs,” explains Hale.

When parents discover their child has a brain tumor, the emotional consequences are overwhelmingly grave. “It’s an extremely complex disease so doctors will refer parents to a comprehensive institution for the proper care – and Miami Children’s Hospital is really the state’s premier institution,” Hale says. “The hospital has the only certified pediatric neurosurgeons in the tri-county area. Surgery is the primary intervention for a child with a brain tumor and the first thing you want to find out is if it is operable or inoperable. In most instances, it will be operable and you won’t find any better neurosurgeons in the state than at Miami Children’s Hospital.”

The grassroots campaign vastly surpassed the small group’s expectations, and after only one year of fundraising, the Children’s Brain Institute was established. “It is the neuroscience program of Miami Children’s Hospital,” Hale says. “Our group thought it would be great if the hospital could expand this program such that it could become a destination for children with any type of neurological disease and the doctors took off with the idea and they made it happen.”

The mission of the Children’s Brain Institute says Hale, “is to provide children with the nation’s very first world-class neurological institute dedicated exclusively to advancing the care and study of the developing pediatric brain.” The goal is to establish an internationally recognized institute of excellence in pediatric neuroscience at Miami Children’s Hospital.

“You take something like this on, knowing there is a tremendous need, even though your fundraisers are small – but they eventually grow,” Hale says. “Then you realize this is more than you ever could have imagined in terms of the daunting work that’s required. That’s why the Foundation absorbed the Children’s Brain Trust and they are now in the process of developing a major capital campaign to be unveiled soon, exclusively for the Children’s Brain Institute.”

This remarkable story could not have happened without the initial commitment and absolute dedication of the founding families who began their grassroots fundraising efforts, which have grown significantly to the corporate regional, state and even national levels. “We have been very fortunate in having some corporations partner with us, making outstanding donations,” says Hale. “We are continuously looking for further partners to help us continue to achieve our ongoing goals. This is something the Miami Children’s Hospital Foundation staff works very hard on.”

Hale says the going was slow and a bit discouraging during the first two years of fundraising – but the group never gave up on its dream. “The first two years was spent just trying to create the awareness and letting people know the mission and what we were trying to accomplish,” he explains. “The first people you go to are those in your circle of family and friends, who are more than happy to help. The Foundation staff is expending its efforts now in identifying prospective donors because they have wonderful contacts – and we have a business plan in place and a capital campaign all ready to become public, which will bring in a lot more support.”

The board of directors from both the hospital and the Foundation made the Children’s Brain Institute their flagship initiative, and as the word gets out the support is growing, says Hale.

The Trust will soon market its fundraising efforts nationally in order to reach philanthropists, foundations and corporations throughout the country. “We have a model out there that we feel very comfortable about,” Hale says. “It’s a professional endeavor and the case statement is very clear that we need this kind of an institution; having a better definition of what the children’s needs are means that we can go nationally with our cause.”