NPR Broadcast re Botox (Diane Rehm - SD patient)

We heard from Robert Mcalister (CEO, DMRF) this morning about this
upcoming broadcast:

"The Diane Rehm broadcast on the national NPR radio network this coming
Friday, July 26, will feature Dr. Stephen Reich of Baltimore. The program will spend the entire hour on the therapeutic and cosmetic uses of Botox. I encourage you to share this information with your networks, and to encourage your constituents to weigh in about dystonia."

And further, from Diane Rehm herself:

Tomorrow, I'm doing a program on the many uses of Botox. With all
the publicity about its use in 'plastic surgery' and for wrinkles, I want to make sure the public realizes it has many important medical applications as well, not the least of which is for spasmodic dysphonia. Would you be good enough to inform everyone that I'm doing this? It will be broadcast live at 11 am edt tomorrow, Friday. For those across the country or around the world who are not in the direct listening area, you can hear the program on your computer, by going to www.wamu.org, then listen on the web, anywhere in the world. There is a toll-free number given for call-ins as well.

Thanks (to you and the NSDA) so much for this timely notification of a very important broadcast. I hope everyone, who can, will take advantage of this opportunity to hear Diane and Dr. Reich.

We have all been so overwhelmed lately with *commercial deluge* (and frustrated by it) advertising Botox for wrinkles, and other non-essential uses, since the FDA approved Botox for wrinkles recently. On TV, in the popular media...everywhere! Many of us have written to newspapers and magazines urging them to acknowledge that Botox is actually a *medical treatment* for some serious conditions and many people cannot conduct their lives without it. Diane's show tomorrow is a way to *educate* the general public.

For those who are new on this Bulletin Board or for those in the Western US: Diane is a very popular NPR Host in the Eastern US. She has interviewed some of the most key decision-makers in our country. She is well-esteemed by the listening-public in that area of the US.

As she told me, when I met her and shook her hand in May, 1999 at the DMRF Victoria Symposium, we don't get her show out here. So, if not for my own SD-case, I would have never heard of Diane Rehm.

Diane's had AD/SD for several years (obviously a major career-impact for an esteemed DC talk-show host) and started taking Botox around 4 years ago. Her story and case have been featured on Ted Koppel ("Nightline") and on several other news shows. Diane is an Honorary Director of the NSDA. By her "coming out" as a nationally recognized-figure (re her SD-case and her Botox-treatment), it helps all patients.

This is an opportunity not to be missed so I hope all SD'ers will take advantage of it and either listen to it on the radio or on the Internet.

--Lynne (AD/SD; Northern California - out of Diane's normal territory)

I was waiting for another listener to report out on Diane's broadcast this morning so I didn't have to answer myself or be repetitive but no one has posted ~ so *here goes.* I'll answer David's post again.

For anyone who either could not listen to the *LIVE* broadcast this morning (via radio or the Internet), the NPR "wamu.org" site will take you to Diane's program site which offers archives of her previous shows. When I first got on this morning, I noticed that I could listen to all her shows from earlier this week, just by selecting the show and clicking on "Listen." It's easy. I don't know how long they keep them though so time may be of the essence, if anyone wants to catch it.

This show is well worth listening to so hopefully BB participants will take an hour to do so. She helped us dystonia-patients alot on that show. She had three medical professionals on with her. Much of what they discussed is known to us who do alot of research on Botox/Myobloc and who have kept up with the recent media frenzy on "Botox Cosmetic." However, I gained new information also.

I've met Diane in person but had never heard her show before (being out of her broadcast area). I was impressed! For one thing, it was her idea to do the show to compare and contrast Botox-use for medical v. cosmetic patients. She did it without passing judgment on cosmetic patients (but to EMPHASIZE that Botox has been used for years for critical medical purposes) and her questions were carefully designed to elicit quality responses. She has such presence with the people she is interviewing AND with the callers on the Live 800 line. I could have listened to Diane, and her panelists, for many more hours.

I'm not going to tell every detail, because everyone interested in SD and how it is portrayed, should listen to the broadcast themselves. I learned about: the Botox training program for physicians (cosmetic or medical); the difference between Botox for medical patients v. cosmetic patients; the opinions of professionals on Botox parties, Diane's own Botox doseage (*low*)in order to host a major talk show on NPR in Washington, DC. and, other things as well.

Diane handled all the callers so well. The two who really got me were a man (physician) from Salt Lake City who was informed and concerned and said that (to paraphrase) all of this publicity for BotoxCosmetic is doing such a dis-service to the medical patients who have needed it for years to live. Exactly. The other one was a woman from Florida who had really bad SD and said her several previous Botox shots had not worked. Diane was a gem and right on target! She did exactly what we on the BB continually try to do. Questions and encouragement to maybe look for another doctor as (to paraphrase again) one may not have the right doctor nor have hit the right spot. Amen.

Dr. Reich (pronounced "rish") is the doctor that dx'd Diane's case several years back. He's associated with Johns Hopkins Medical Center. Diane said she went 8 years without a diagnosis. With that history, she's certainly one of us.

She sounded good today (a slight tremor, but with the esteem her regular listeners hold for her, she can get away with it) and she deserves our applause and thanks for doing this program. I'm a huge radio talk show fan, out here in the San Francisco Bay Area. KGO. I listen to highly intelligent people debate critical issues all day long. Still, this one out of Washington, DC (that I can only get on the Internet) was impressive, informative, well-scripted, professional; and, it achieved its aim in a mere hour. To educate the public that there are additional important uses of Botox, other than cosmetic and that those uses have been critical to patients for up to 15 years. Also, to give some history and factual information to people considering Botox.

Thanks to Diane and her guests, I now know why the FDA has never approved Botox for SD patients (why it is still being used "off-label" for us).

Hope everyone listens for themselves. It's well worth the time.

At this link, look for the date Friday 26 July, and click on "Botox". This opens up a new page. Scroll down to near the bottom of the page and click on "Listen". You might need to have software like Real-Player audio installed ...

There is also an option there to order a tape of the program.