If you live in Philadelphia, you have seen the billboards on I-76 or the television spots advertising one of CHOP's biggest events: The Black Tie Tailgate. This year's BTTG is January 29th, and if you are like me, you never paid too much attention. Pat and I are not the sort of people who would spend $225 a ticket to go out for the night. Pat has not put on a tuxedo since our wedding in 1994 and I hardly wear dresses, much less formal-wear.
And yet, this year Pat and I are going to be on the red carpet getting photographed for the Philadelphia society pages. This is all the more remarkable since last January we were at CHOP with Cal in the Pediatric Intensive Care Unit.
But we are not just going, we are on the planning committee and we hope as many of our friends who can will join us there too. The 2016 Black Tie Tailgate benefits the Division of Neurology, and 75 percent of the money CHOP raises will go to support the doctors and families at the Leukodystrophy Center. That means of the $500,000 raised at this year's Tailgate, $375,000 will got to the Leukodystrophy Center.
Dr. Banwell, the Division of Neurology Chief, has amazing doctors taking care of children with disorders ranging from strokes to epilespy, but among all those programs, the doctors at CHOP understand the Leukodystrophy Center fills a great need and that leukodystrophy is on the verge of a game-changing moment.
As the first major center dedicated to the care and treatment of children with leukodystrophy: more than 35 specialists and doctors providing everything from palliative care and family support to cutting edge research in gene therapy. The Leukodystrophy is CHOP's bold investment in a future where newborn screening and new therapies will do more than cure children, but doctors will prevent them from ever becoming sick.
Since launching in May, the Leukodystrophy Center has performed its first bone marrow transplant on an Adrenoleukodystrophy patient (CHOP had performed the treatment before for leukodystrophy patients but now there is Neurology support team) and seen patients from all over the country. The Center has witnessed a 33 percent increase in the number of leukodystrophy patients in just 5 months and they will be launching a number of new research projects at the start of the new year. Clinics are booked months ahead of time.
Other hospitals are eager to learn more, they are referring children and requesting meetings with the CHOP doctors to see how they can work together and to fight leukodystrophy.
The need for this gift is also unique because of the patient-driven way the Center works. With doctors coming to patients and specialists spending 30 minutes to an hour with each patient, the Center does not generate as much revenue as other programs. But the doctors at CHOP understand these diseases are very special and families can't be pushed through on a conveyor belt. That's why the Center will always depend on the support of donors, and that's why I am asking for you to join us on for the Black Tie Tailgate at the Convention Center.
Consider purchasing a ticket, join us on this really special night, and help us make a difference in the lives of these beautiful children. It has never been easier to have a good reason to go out and get dressed up.
You can purchase tickets or even buy a Clutch Teddy Bear to help. You will get to see Pat and me doing our best to look comfortable like we fit in, but, this is an important night for the Leukodystrophy Center so we will be there.