The Colegroves were recently featured on Good Morning America. Their

website www.drdcentral.com is designed specifically for families dealing

with dopa-responsive dystonia.

Please check your local listings for the Oprah Show. After the show, we

encourage all of our members to contact the Oprah Show directly to thank

her for the program and share your own dystonia story. We'd like to

educate Oprah about the other forms of dystonia and that not all

dystonia-affected individuals are fortunate enough to experience such

miracles. The website is www.oprah.com



*** Please note that on the Oprah website it indicates the show is scheduled for Friday, October 25th. We (DMRF) have received confirmation from the producer that the show will air on Thursday, October 24th.

Guess we patients have to work in determining when this show is on in our local areas. Right? It's OK because you alerted us in time.

As one who has written to Oprah and Montel and a bunch of other talk show hosts over the years (whenever I see something about diseases/disorders which prompts me to say..."what about us?"), this is great news!! Making headway.

I attended a large *dystonia-related* symposium in the Western US this past week-end. It was awesome and educational. Although I was the only person there with Spasmodic Dysphonia, I learned SO much about dystonia which related to my own case. I was with the neck-people, but I learned alot about my voice also. With dystonia...our commonalities are larger than our differences.

Thanks Anne. I'll be scrambling to find out when this Oprah show is available in my area. This is excellent awareness for all dystonias.

Unfortunately Oprah is syndicated here in NZ so I guess it will air quite a bit later!

For anyone who has not seen this Oprah Show today, it was one of a series of "amazing" and inspiring human anecdotes and vignettes.

The Colegrove's story took about 6 or 7 minutes but the show did mention DRD and showed pictures of the kids in wheelchairs and being assisted while riding horses and living, prior to their diagnosis and treatment. They went 5 years without a diagnosis.

Following treatment and out of their wheelchairs, Harrison and Gracie appeared briefly on stage (confidently walking on), with Oprah. Harrison (very mature 11-year old that he is) spoke about hope. The piece said that once he got medication (after all those years), he responded to his meds within 30 minutes. Hope folks were paying attention to that!

Compared to the other miracle-stories, I didn't think they gave Harrison and Gracie enough time for the viewers to really understand what they and their family had been through; but, nonetheless, it was very nice and very positive.

As always, it's difficult for the population to understand and acknowledge this odd disorder called dystonia. Are Harrison and Gracie going to be in Miami? Sure hope so. They were so adorable and mature,

on the show.