Sheila Rogers DeMare, Director Association for Comprehensive NeuroTherapy
The TAA/TSA has censored and controlled the media message, making it difficult for families and physicians to learn of integrative and natural approaches to Tourette syndrome.
Producers of two documentaries on Tourette syndrome and a doctor writing for a pediatric journal contacted us. Each wanted to include information on natural approaches in their work. And in each case, the Tourette Syndrome Association made sure that did not happen.
I was contacted by the BBC about a documentary on Tourette syndrome being produced for the Discovery Channel. A production team flew from London to West Palm Beach, Florida to film our efforts in my home.
The BBC team was wonderful and was genuinely interested in alternative approaches to Tourette’s. After filming me, they went across the state to get the story of Ginger and Griffin Wakem.
We’d been told it would take months for the film to be finalized. As we waited, e-mail messages started coming from key BBC staff. Sorry, Sheila. We’ve heard we have to cut some of the material; So sorry, we’ve been told we shouldn’t include most sections of the film on natural approaches . . . . I was informed this directive came from someone on the Tourette Syndrome Association’s medical board.
In the released 2000 documentary Tourette’s Syndrome, all the filming done on our efforts was cut. A brief segment showed Griffin and Ginger but gave no details on actual therapies used or how anyone could find help.
I Have Tourette’s, But Tourette’s Doesn’t Have Me
In 2004, a producer posted a note on our popular forum for Tourette syndrome and tics. She explained that an educational documentary on children with Tourette’s was being produced and said they were “very interested in finding families who have children between 7 and 12 years old who are not taking the usual concoction of medications for tics, ADHD, OCD, etc.”
We responded that we could definitely find people who would be happy to share their success stories. We soon received a “thanks but no thanks” message. The producer had been instructed that they could not feature anyone who used natural approaches to control tics. You see, I Have Tourette’s, But Tourette’s Doesn’t Have Me was produced in association with the TSA.
The film’s producer was interested in including children who had symptom control without drug therapy and knew the public was interested as well. But the TSA wanted to withhold information from the public it had been aware of for many years.
It is unfortunate for families that the TSA would not allow this otherwise excellent documentary to include at least one child who has control over his or her tics thanks to integrative therapies without drugs.
Controlling the print media
I received a call from a doctor who explained he was doing an article on Tourette syndrome for a pediatric journal and was interested in learning about natural approaches to Tourette’s.
We talked a bit, and at the end of the call, he told me he was a new member of the national Tourette Syndrome Association’s medical advisory board. My heart sank, because I knew what would come next.
Sure enough, it was not long before he had the courtesy to let me know he’d been told by the chairman of the TSA medical board not to include approaches related to diet and environmental triggers like allergy in the article.
This doctor’s 2005 article ended up in the journal Contemporary Pediatrics and is featured on the TSA’s website. It was discussed in Part Seven of this series, because instead of the article simply omitting information on diet and allergy, it was worse. It falsely claimed it was a “myth” that dietary and allergy efforts for Tourette syndrome can minimize tics!
We are under no illusion: ACN Latitudes is David, and the TSA is Goliath. But that doesn’t mean the truth will not prevail and that the voices of families everywhere will not be heard.
Concluding article on Why the Tourette Syndrome Association Should be Investigated:
Part 10: Moving forward.
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