Children’s Brittle Bone Foundation Gives Soft Landing For Patients With Osteogeneis Imperfecta
September 9, 2015
Since 1990, the Children’s Brittle Bone Foundation has raised awareness and provided research and support for children living with the rare bone disease Osteogeneis Imperfecta.
Today in the United States there are 20,000 to 50,000 people living with Osteogenesis Imperfecta (OI), though an exact number isn’t known because the disease is so frequently misdiagnosed. As a result of this and a genral lack of awareness, there was very little money being raised for the disease as recent as 25 years ago.
The Children’s Brittle Bone Foundation was founded in 1990 to combat this issue. “Our mission was to raise money and awareness for research into causes and an eventual cure for OI,” says David Coleman, the foundation’s President of the Board of Directors. Coleman has been with the foundation for more than 10 years, but his history goes back to its founding, when a family friend was born with OI and several local families came together to raise money for research.
Since then, the non-profit charity has made huge strides in OI research and raised awareness on a national level. “Over the years we have done really a terrific job raising money very efficiently and putting it to work with a one-hundred-percent volunteer organization,” Coleman says. A strong volunteer staff allows the foundation to put every dollar raised toward medical research and impact grants for children living with the disease.
Through concerts, golf outings, and lobbying Congress, the Children’s Brittle Bone Foundation was able to fund 23 research programs between 1990 and 2002. The National Institute of Health designated $12 million in live funding in the late 1990s, as CBBF was the only organization funding research for OI at the time. With this grant, the foundation was able to organize fellowship grants for scientists specifically studying OI, encouraging research in the area and providing stability for scientists who previously were unable to study OI due to lack of funding. Often, scientific research is competitive and so it is not widely shared, but the CBBF shares information across researchers, creating a base of knowledge.
In early 2008, in a joint initiative with the Osteogenesis Imperfecta Foundation, the CBBF created the Linked Clinical Research Center program (LCRC), a nationwide network designed to provide medical care for people with OI. Before the center, there was no standard of care for OI treatments, services, or medications. “Most hospitals see so few OI cases that they don’t know what to expect,” says Coleman. The LCRC program captures data across its six nationwide centers throughout the life of patients, providing doctors across the country with information and case studies they would not have had otherwise.
After 2014, the foundation lobbied Congress again and was approved for another $6.25 million in funding to create the Brittle Bone Disorders Rare Disease Clinical Research Consortium. The center focuses on research, understanding, and treatment options for diseases characterized by bone fragility and fractures, and puts OI on the same national level as other rare diseases like ALS and cystic fibrosis.
“Because of our research, we’ve been able to make many remarkable strides,” says Coleman. “When my friend was born with the disease, they knew it was OI and that was it. Today, we can tell you exactly what kind it is, what it means, what your life will be like.” He says that information makes a huge difference for children and parents. There are eight types of OI, each requiring different types of treatment and drugs. “Having the correct OI diagnosis has been one of the biggest breakthroughs,” Coleman says.
While research has been a critical part of CBBF’s work, Coleman says it’s the impact grants that have the most tangible results. “Research, as important as it is, is sometimes an underappreciated value compared to when you can see what you’re putting your money towards and see the difference it makes in someone’s life,” he says. The Impact Grant Program, started in 2009, provides things like wheelchairs, ramps, handicap accessible vans, and other necessities to OI patients and their families. “It’s like Make a Wish meets Home Makeover,” says Coleman. He says when most people think of brittle bones they think of arms and legs, but OI also affects teeth and the bones in your ear that allow people to hear. Since the program was created, more than $18 million has been raised to fund more than 100 grants.
One of CBBF’s biggest fundraisers, the annual golf outing, was held August 10 at Knollwood Country Club this year. “We try to be different from regular charity golf outings,” says Coleman.
Donations and volunteers keep the CBBF running and providing research and grants for families of children with OI. If you’d like to volunteer or be involved with the foundation in any way, contact David Coleman at [email protected].
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