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Dear Listserv Members, Starting this past Sunday while I was out all day at an event for Parkinson's, I began getting calls of excitement about Dr. Schuller's announcement. I got the calls from people not prone to getting overly convinced at first announcements of the many claims that can be out there. So first thing yesterday, after more calls coming my way, I called the Crystal Cathedral and identified myself. The person answering the phone apparently had been getting calls...well, you can imagine! She said Dr. Schuller issued a statement that there was no more information yet. I jumped on the word "yet"...and then she said that the program was a rebroadcast of a previously pre-recorded program. She could not give me the date of the original broadcast...but this is somehow ringing a bell with me that this was not very recent. To have to report this cruel, cruel follow up news to those I care about...and especially to have to cradle in my arms my disappointed PWP loved one who heard the Dr. Schuller cliff hanging statement on television....has prompted me to also write a letter to the senior Dr. Schuller. He was completely out of line in the first place to make such a reckless statement without considering the consequences and impact this would have on a most brave group of people suffering from PD and who cling to any bit of realistic hope. But then, to not have anyone monitor and edit previous broadcasts is completely unacceptable. Leaders who have won the confidence of those listening to them have the moral obligation to consider the hearts and hope of those people who trust them. Reckless carrot dangling without any disclaimer was quite damaging, regardless of best intentions, and, therefore, I support Joan's comments. I urge others to contact Dr. Schuller as I will. The Parkinson's Community deserves an explanation and a most humble apology. Still believing in verifiable research and realistic hope for victory,Susan KlineExecutive DirectorThe Hazel Hutchman Memorial Neuroscience CenterReseda, California > Date: Tue, 14 Oct 2008 09:35:51 +0100> From: [log in to unmask]> Subject: Re: Joan's Schuller letter re PD cure> To: [log in to unmask]> > My response - if genuine - come in through the front door with proof, don't > sneak around like a cheap confidence trickster.> > Quoting rayilynlee <[log in to unmask]>:> > > Joan would like to hear your response> > > > Rayilyn Brown> > Director AZNPF> > Arizona Chapter National Parkinson Foundation> > [log in to unmask]> > ----- Original Message ----- > > From: Joan Blessington Snyder> > To: rayilynlee> > Sent: Sunday, October 12, 2008 8:07 PM> > Subject: about rev. schullers cure> > > > > > i wanted to know what the listserv thinks about it.> > > > Dear Sir:> > I think you do an tremendous disservice to your parishioners and also to the> > > > entire Parkinson's community by announcing from your pulpit that there is a > > "cure" for Parkinson's Disease.> > > > I think that the way you pronounced this news was steeped in innuendos and > > secrecy: not naming the researcher, not saying which national PD foundation > > was sent his "triple checked" paper and then not even being clear about when> > > > he would appear on your show.> > > > Perhaps you do not understand just what is at stake here for a desperate > > group of people who live with this damn disease daily-for you to actually > > drop this type of verbal bombshell and then to not explain yourself is > > unconscionable. It makes my life just that much harder as an advocate for > > awareness and fundraiser for PD research.> > > > Now that people have heard it from you, they will assume that this another > > thing they can cross off their list of worrisome things to think about and > > assume that all is well in that little corner of their world. If this man > > really has made a breakthrough in his research, it will take many years for > > his treatment to trickle down to the ranks of the patients like myself (dxed> > > > for 18 yrs) . And people will still be getting this dreadful diagnosis > > daily.> > > > I don't know what you can do to repair the damage that your reckless > > comments have already done...but I hope that you can resolve this situation > > quickly.> > Respectfully,> > > > Joan Blessington Snyder > > > > ----------------------------------------------------------------------> > To sign-off Parkinsn send a message to: mailto:[log in to unmask]> > In the body of the message put: signoff parkinsn> > > > > > > ----------------------------------------------> This mail sent through http://www.ukonline.net> > ----------------------------------------------------------------------> To sign-off Parkinsn send a message to: mailto:[log in to unmask]> In the body of the message put: signoff parkinsn _________________________________________________________________ Check the weather nationwide with MSN Search: Try it now! http://search.msn.com/results.aspx?q=weather&FORM=WLMTAG ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn