In October 2010 Drambel and Dunay, who work in the medical device sales and medical sales fields, respectively, co-founded Let’s Cure CP, a national, Atlanta-based nonprofit dedicated to fundraising for research and treatment of the disorder.
Cerebral palsy affects 800,000 Americans, according to the United Cerebral Palsy Foundation. The National Institutes of Health, which funds research for several other diseases, until recently allocated no monies to cerebral palsy research (today it’s only 0.05 percent).
“More than 10,000 babies [in the U.S.] are born annually with CP. It affects more individuals than childhood diabetes and childhood leukemia combined, and it’s on the rise because babies are being saved by doctors due to modern technology,” said Dunay, citing statistics from the DeKalb County-based Centers for Disease Control and Prevention.
Another eye-opening number from the CDC: $1 million, the lifetime cost for one individual’s medical care, and that figure is rising, Dunay said. According to the Let’s Cure CP website, one in three children with the disorder cannot walk and one in four cannot feed and/or dress themselves.
There are currently no U.S. clinical research studies for those with cerebral palsy, but in recent years there were one each in South Korea and Mexico, where patients saw a 30 percent improvement rate in their health, Drambel said. Dunay and her husband Dave even took their son Alex to Mexico in March 2011 to participate in that one.
“We’ve seen improvement in Alex,” she said. “Is Alex cured? No, but he’s 20 percent improved.”
However, an FDA-approved study is being planned in America. It will cost $1.3 million and will treat 30 patients, with half using stem cells from their own hips’ bone marrow and the other half using their own banked cord blood from birth. Dunay and Drambel said they could not disclose more information about it because it is still pending.
To combat the lack of funding for cerebral palsy research, Let’s Cure CP will host its inaugural A Night at the Derby party Friday at the Defoor Centre in west Buckhead. The Kentucky Derby-themed event will include dinner, drinks, music by The Bradley Cole Smith Band and a silent auction.
Organizers hope to raise $50,000. Through previous fundraising efforts, Let’s Cure CP has raised about $350,000 and after the party plans to donate all the monies to the study to help get it started. Both Drambel, of Buckhead, and Dunay, of Brookhaven, said the study will help improve and possibly lengthen the lives of children with cerebral palsy.
Drambel’s son John, 9, is a quadriplegic and requires round-the-clock care. He cannot dress or use the bathroom himself, and must communicate through a device on his wheelchair. Drambel and his wife Maurie also have two healthy children: John’s twin sister, Katie, 9, and their brother Will, 11.
Alex, who turns 11 May 9, has a less severe form of cerebral palsy than John, but still requires help with activities such as stretching, eating and brushing his teeth. The couple also has a daughter, Emma, 7, who is healthy.
Both boys with cerebral palsy make frequent trips to both doctors’ offices and therapists to maintain their health. Their parents said they hope the planned study will not only improve children’s lives but also lower their medical costs by possibly finding a cure by providing more information on the brain, which Dunay calls the body’s “most complex organ.”
“Our goal is to not only help not only our children but others so they can have more abilities throughout their life. … If we can get this trial going and help these kids,” it would be huge, Drambel said. “We want to free up the speech for these children. If we could give these non-verbal children the ability to speak, it would be a major breakthrough for these children, the parents, their schools and friends.
“What John could do in the future with a career is extremely limited. [The study’s potential for change] is a paradigm shift. You’re taking someone who’s dependent for the rest of his life to being independent. That’s a huge turnaround.”
Said Dunay, “This clinical study will unlock the door for tens of thousands of people.”
If you go:
o What: Let’s Cure CP’s A Night at the Derby
o When: Friday at 7:30 p.m.
o Where: Defoor Centre, 1700 Defoor Ave., west Buckhead
o Benefits: Cerebral palsy research
o Tickets: $100 per person
o Information and donations: www.letscurecp.org