Does any one have any experience with the genetic muscle disorder institute at Kennedy Krieger, I think it opened fairly recently, Dr. Wagner was at Hopkins with Dr. Crawford who we see now however i was thinking of scheduling Reign to go to this new clinic that Dr. Wagner started, just to see if they approach things any differently... Thanks

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Hello Theresa,

My two sons started going to Kennedy Krieger Institute within the past year. Dr. Wagner has much experience with older patients with neuromuscular disorders and is working to develop a patient centered interdisciplinary clinic at Kennedy Krieger. You may also be interested to know that Diana Escolar, formerly at Children's National Medical Center in Washington, DC is also affiliated with this program. Either doctor is happy to see your son and I'm certain he will get great care and wonderful advice from either doctor. Before going to clinic in Baltimore I was more familiar with Dr. Wagner and Escolar based on their research activities. I believe they are both excellent clinicians.

As parents we often read or hear about one clinic or another. One thing happening is a few clinicians are working to develop patient centered programs based on the best practices known. The more patients are able to visit these clinics, whether for primary care or for support of care received locally, the quicker these programs develop. The key is two way dialouge.

The program under development at Kennedy Krieger is well worth investigating. Our experience is that appointments are scheduled tightly avoiding lengthy stays and there are world class physicians and therapists treating young men with DMD.

One thing that impressed me about the approach at KK is their emphasis on not only maintaining function, but ensuring that the boys and young men focus on improving ability to continue doing activities important to them. Dr. Wagner and her team look at the individual's interests using that as the basis for a course of therapy designed to prolong function to continue those activities as well as motivating patients and their families to focus on what activities/therapies will improve quality of life.

I'm sure going to this clinic will be well worth your time.

Brian Denger

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