I'm reading a lot about Dr. Wong in these discussions - we are new to this whole world of DMD and I'm wondering if she is the expert in the US? I've noticed people from other states going to Cincinnati to see her.

Any info you can give is appreciated!

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Hi Tonya,
Dr. Wong is a neuromuscular specialist whose entire practice is DMD boys. Beyond that, she is extremely personable and kind.

After a terrible experience here at Children's Hospital in Seattle, we went to Dr. Wong, and it was a much better experience.

She is on the cutting edge in terms of DMD standards of care. She is also very accessible - whenever we have a problem, we email her, and I always hear back by the end of the day.

A new doctor has just come to Seattle Children's, however, so we will probably be staying here, although I love Dr. Wong.

If I didn't trust Dr. Apkon so much (new Seattle doc), I would definitely still be going to Cincinnati.

Take care,
Mindy
Hi MIndy-

Thanks for the info - did you have to pay out-of-pocket to go to Dr. Wong, or did insurance cover it?

Tonya

Mindy said:
Hi Tonya,
Dr. Wong is a neuromuscular specialist whose entire practice is DMD boys. Beyond that, she is extremely personable and kind.

After a terrible experience here at Children's Hospital in Seattle, we went to Dr. Wong, and it was a much better experience.

She is on the cutting edge in terms of DMD standards of care. She is also very accessible - whenever we have a problem, we email her, and I always hear back by the end of the day.

A new doctor has just come to Seattle Children's, however, so we will probably be staying here, although I love Dr. Wong.

If I didn't trust Dr. Apkon so much (new Seattle doc), I would definitely still be going to Cincinnati.

Take care,
Mindy
Hi Tonya,
My insurance covered it because I have Blue Cross, and she's in the Blue Cross network...
Mindy
We miss Dr. Apkon at the Children's in Denver. You'll really like her!

Mindy said:
Hi Tonya,
Dr. Wong is a neuromuscular specialist whose entire practice is DMD boys. Beyond that, she is extremely personable and kind.

After a terrible experience here at Children's Hospital in Seattle, we went to Dr. Wong, and it was a much better experience.

She is on the cutting edge in terms of DMD standards of care. She is also very accessible - whenever we have a problem, we email her, and I always hear back by the end of the day.

A new doctor has just come to Seattle Children's, however, so we will probably be staying here, although I love Dr. Wong.

If I didn't trust Dr. Apkon so much (new Seattle doc), I would definitely still be going to Cincinnati.

Take care,
Mindy
That's good to hear, Liisa. I've only met her once, but she took quite a bit of time to talk to us, and seemed great. I just wanted someone who was motivated to be in on any research advancements, and she's already reached out to different companies in order to hopefully participate in future trials.

So while we will miss the Viper at King's Island as well as Ric and Brody (and Bryce), it is much easier and cheaper to stay in Seattle...
You can also find a few more good clinics around that are closer to you. I've heard CHOP and CNMC in DC are very good. There are parents on this site going to these clinics, I am sure they can give you more info. I personally also like Columbus Children's (Mendell & Flanigan) but that might not be as close to you as the other ones.

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