Derby-themed party races to help cure cerebral palsy – MDJOnline.com

Whats it like to have a child with cerebral palsy? Just ask Maurie Drambel of Buckhead or Lizette Dunay of Brookhaven.

Drambel and her husband Ed have three children: Will, 15, and twins John and Katie, 13. John has the congenital disorder of movement, muscle tone or posture on the Gross Motor Classification Systems highest level, 5.

John needs help 24/7, said Drambel, who with Dunay co-founded Cure CP, an Atlanta-based nonprofit devoted to finding a cure for cerebral palsy. He cannot do anything independently. He cannot hold a pencil, feed himself or hold a drink. He relies solely on everybody else. So he needs a one-one-one caregiver at home and at school.

Having a child like John is wonderful and amazing and also exhausting. Were traveling to five states to see outside specialists. So having a child like that who cant get all the services he needs in Atlanta, which is a huge mecca for medical care, is tough. We have to fly across the country to Dallas, Houston, Philadelphia, Pittsburgh, and the University of Florida in Gainesville. Weve had to seek out and find specialists everywhere.

Dunay and her husband Dave have two children: Alex, who turns 15 in May, and Emma, 11. Alex has cerebral palsy but on Level 2.

I think thats something people are unaware about, Dunay said of the efforts families must take to deal with children who have the disorder. (Alex) is on the milder side but he needs help with everything except feeding. Even though he can do some things with mild assistance, he still needs assistance with everything.

I think people dont realize that youre not going to die from cerebral palsy necessarily, but its very debilitating and can rock your life in that these children and adults need help in almost everything they do. Things we take for granted are things they have to get help with on a daily basis.

The two mothers, with the help of event chair Jennifer Kellett and a host committee, are planning the fifth annual A Night at the Derby, a Kentucky Derby-themed party May 5 at Summerour Studio in west Midtown. Benefitting Cure CP, the event will include an open bar, dinner by Endive Fine Catering, games, live and silent auctions and music by the Sundogs band. Attendees are asked to wear festive Derby attire, and there will be a prize for the best Derby hat.

The Cure CP co-founders said this years live auction will include a trip to Los Angeles that includes green room passes to the Jimmy Kimmel Live show, a bottle of rare Pappy Van Winkle bourbon, a week at a condo in Costa Rica and a weekend trip to Nashville.

Dunay said Cure CP hopes to raise a net of $100,000 after collecting a net of $75,000 in 2016. The nonprofit is expecting more than 300 guests this year, about the same number as in 2016. The funds will go to research to find a cure for the disorder, which receives only 0.05 percent of funds from the National Institutes of Healths annual budget, Dunay said. She added there are 17 million worldwide and over a million in the U.S. with cerebral palsy, a rate in America of one child born each hour. After autism, cerebral palsy is the second most prevalent childhood disability in the nation.

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Starting in 2014, Drambels son John participated in a landmark study at the University of Texas in Houston, where he among a group of 30 patients ages 2 to 10 to receive two forms of bone marrow stem-cell treatments as a way to help cure them of cerebral palsy. The results are being compiled now and will be released later this year.

(John) saw the minimal amount of improvement but was able to roll over by himself and was willing to talk more, Drambel said. Other children who are much younger have seen much bigger gains and results.

Since A Night at the Derby is Cure CPs largest annual fundraiser, the funds raised there are critical to the organization, the co-founders said.

Were going to be giving money for regenerative medicine at Duke (University), Dunay said. Theres a big trial there for regeneration, using donor cord blood stem cells for kids with CP in hopes of getting some improvement in myelation, which is basically a lubricant sheath that submits signals from neuron to neuron. People with CP have a breakdown in myelination.

She also said Cure CP will donate funds to a trial at Phoenix Childrens Hospital in Arizona, where doctors research, through DNA analysis, has shown the disorder may be inherited from parents.

This is huge because there are some people that are quadriplegic and they have a clean MRI (brain scan), so theres something (else) going on with them, Dunay said. Maybe its because theyre genetically predisposed to have CP. Bob Dylan has two children from two different wives and both of them have CP.

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Derby-themed party races to help cure cerebral palsy - MDJOnline.com