February 8, 2015
Friends of TicTocStop,
Hard to believe… we are just over 1 year into the organization of the TicTocStop Foundation… and YOU are the reason we are currently funding medical research helping both children and adults who have Tourette's Syndrome.
I want to update you on the tremendous progress of the TicTocStop (TTS) dollars that have been raised to date - and what those dollars are being used for; as well as share some personal experiences.
TicTocStop was started with a couple goals in mind that all began with helping my own son and daughter. The passion that I have as a parent has morphed into something much bigger – and now, the broader goal of TicTocStop is something really simple, special and achievable — to find a non-pharmaceutical, non-invasive and scalable treatment.
The option of anti-psychotic drugs to treat my children was offensive, obtrusive and debilitating. As a parent, medicating your children is always a terrible choice (sometimes necessary but always terrible). Deep brain stimulation is an even poorer option. It is not FDA approved and even if it were, I would not subject my children to a glorified lobotomy. Finally, CBIT therapy has promise but it is not for everyone. Predictability, trained therapist and time seem to be the major obstacles.
Where does that leave us? An oral appliance!
TTS has put together a research team headed up by William L. Balanoff, DDS, MS, FICD. Dr. Balanoff has designed a research project that has the approval and blessing of the FDA. The research involves an oral appliance designed in such a way that it predictably reduces tics (motor and vocal), both in severity and frequency, by at least 30% in a majority of patients. TTS conducted a pilot study where the overall reduction was almost 65%. It was the amazing results of our pilot study that allowed us to move forward so quickly with a statistically significant, clinically relevant and comprehensive study.
The University of Tennessee is conducting the research. The lead investigator is Tim Hottel, DDS, MS, MBA. Dr. Hottel is also the Dean of the dental school at the University of Tennessee, Memphis. The study involves patients (children and adults!) at two locations and will predictably mitigate the physical and clinical manifestations of a neuro-psych disorder such as Tourette Syndrome and Chronic Tic Disorder. This has never been done. TTS is proud to fund this groundbreaking research that will not only help my children but also help all children and adults who suffer.
Recruiting patients for the study is one of the most difficult parts. We screened many but only 1/3rd of them qualified.
The other difficult part is paying for it!
While the study itself is simple in design, it costs money to perform it. Having said that, if the study proves what we expect it will, the FDA will grant $510,000 for medical clearance of the device.
That is a BIG DEAL!
The next phase will allow research to be done to help understand why the appliance works. Understanding “why” will allow better medical screening of young children, allowing for early intervention treatments. Best of all, the children and adults whose lives have been impacted by this disease will have relief.
There is no doubt in my mind that the TicTocStop Foundation will be the ones to provide treatment; then help find a cure. The goals of TTS as a foundation are connected spiritually to patients as well as bound by good medicine and science.
I hope I can count on your financial support for this simple, special & achievable study.
Also, I invite all of you to reach out to Dr. Balanoff. He has been instrumental in getting this entire project going and moving it ahead. He would love to discuss, educate and answer all questions about the research, the FDA and patient results. His contact information is Wbalanoff@me.com or 954-683-2693.