I have been reading so many of you see Dr. Wong in Cincy. We live just outside of Indianapolis, and would be willing to take the short trip. How do we go about getting an appt? My son was diag. in Oct. 07. I would not say I am dissatisfied with our neurologist, but I feel like I am guiding all of his care and missing something. We are going to the conference in Philly this summer, so maybe we will know more.

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You will not be disappointed. We drive 5 hrs to see her from MI.

Shelley Goldman, RN Care Coordinator
Comprehensive Neuromuscular Care Initiative
Phone: 513-636-4324
Fax: 513-636-1874
email: Shelley.Goldman@cchmc.org

Karen Long, RN
Clinical Concierge
Cincinnati Children's Hospital Medical Center
(513) 636-5151 office
(888) 894-1374 toll free
(513) 636-2616 fax
email: clinical_concierge@cchmc.org

Cincinnati Children's Hospital Medical Center
MLC 9014, 3333 Burnet Avenue
Cincinnati, OH 45229-3039
Email Karen.long@cchmc.org. Karen is an RN that coordinates the care and appts. She or someone else will probably call you and discuss your sons needs to determine which specialists should be seen in addition to Dr. Wong, PT, Cardio (there may not be any others....but...). Karen is a good place to start....
Good luck! Lori
Although we are going once a year from Texas, the level of care there is many (many) times better than anywhere we have been in the first 7 years of diagnosis. It is very much worth the trip. Dr. Wong is caring and very knowledgeable in current research and therapies.
We just went and I highly recommend Dr. Wong and other CCHMC Staff to your family. We really were satisfied with Bradley's neurologist at St. Louis but when we got to Cincy, we certainly discovered a uniqueness about the care at CCHMC. They really seem to care about your son and the rest of the family. Most importantly, they are highly knowledgeable about DMD.
We drive from New Jersey to Cincinatti twice a year since my son was diagnosed 7/21/05. We would't change a thing. Dr. Wong as well as the rest of the team in Cincinatti Childrens are amazing!
Okay, who is this Dr. Wong ? What does he offer that is so great ?
Dr Brenda Wong offers, knowledge, experience (one of the largest groups of DMD patient's in the world), compassion, humanity and a determination to find new approaches to treat the disease. She has developed a working group of different specialists (endocrine, neurology, cardiology etc) and ancillary staff (such as dietitians and physical therapists) that create an individualized program for every patient. We have been impressed with the way they and the hospital staff in general at CCH create such a "small" and family feeling in such a large and complex medical center.

There are different centers in the US with great docs as well such as Brian Tseng in Boston, Richard Finkel at PENN (CHOP) and others. We travel from Missouri to see Brenda and are very pleased.
We live about 40 miles south of Atlanta and drive 9 hours to see Dr. Wong. She is fantastic. You will not be disappointed if you see her. I worried about getting an appt for our son and when I called Shelley Goldman told me that Dr. Wong does not turn any DMD boys. I wish that we had found her sooner!

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