Interview with the  Specialists

Last December, I had the chance to sit down with the Doctors of the UCLA Childhood OCD, Anxiety and Tic Disorder Clinic. If you are like me and research every nuance about Tourette Syndrome, you will recognize the names.  Dr. John Piacentini, Dr. Erika Nurmi and Dr. Susanna Chang are the physicians who research Tourette Syndrome and the other disorders that link up with TS.  They work with another big name in the TS world, Dr. James McCracken.  I have always wished I could ask these experts everything about Tourettes and get some real answers.  Here is what I found out.

Why can't families who have a child with TS get better care?
The reality is that Tourette Syndrome is considered a relatively rare neurological disorder.  Federal scientific agencies such as the National Institute of Health (NIH) along with the CDC estimate the prevalence rate of 0.3%; about 1 child in 360. Therefore, funds to support research, education and training are limited.  Few physicians choose to specialize in TS and the related disorders after medical school.  The complexity of a Tourette Syndrome  diagnosis means physicians need to be able to treat the co-occurring conditions such as OCD, ADHD, depression and Oppositional Defiance Disorder.  Tourette Syndrome presents a challenge to even the savviest of physicians.

Does the Clinic hand pick their patients?
No, the clinic does not hand pick patients. Our team sees patients aged from 4-18 and there is a long wait list. The training clinic is staffed by child psychiatry fellows and psychology interns who are directly supervised on-site and as treatment/therapy is in session.  Some cases may be chosen for clinic visits depending on the acuity of the patient and if it will provide a good training experience for our clinicians.


Can you get in quicker if you participate in a research study?
No, however the program has 2 parts; the research arm and the clinical arm. These two departments often end up working together.  Our team becomes familiar with the families who participate in the research studies and know their clinical needs.  If those patients are a good fit for the training clinic, we can bring them across to assist further.  Sometimes, clinic patients become interested in research studies and so they may also cross over into that clinical experience.

Can the Clinic give referrals to local professionals who treat TS patients?
Unfortunately, there are only a few professionals that our team is familiar with and feels comfortable referring families to. We see the need to develop a good referral list that has been researched and verified.  Looks like joint project for the future!

Don't your graduates often stay in SoCal?
Some stay and others leave the area to pursue other opportunities. Many of those on our referral list are former trainees who we have supervised and know have the experience with TS and its treatments.

Don't you get funding from the National TAA to support and help our local 
families affected by TS?
Funding  from the national TAA is mostly for research projects.  As a Center of Excellence, our Clinic has reached out to the So Cal Chapter and have committed to working on joint projects that support patients and families alike.  More to Come!

Special Thanks to Dr. Susanna Chang for helping me get the details of our interview correct.
Janine Tejeda, President
ScholasTIC Tourette's Supporters, Inc.

A Holiday ThankYOU

Thanksgiving is the beginning of the end; the end of 2016.  Everyone is reflecting on the past 10 months and how fast it has sped by.  Here at the ScholasTIC Tourette's Supporters, we are gathering our "Thank-You" notes and tallying up the support we have received, and it has been an AMAZING Year.
Year #1 was taken up with paper work and the Articles of Incorporation.   But, this 2nd year has been a wonderful surprise.
We truly have been humbled and inspired by the number of supporters we have gathered, by the amount of money we have raised for our scholarship fund and by the trust and faith people have in us.
It started with Smile.Amazon.com
This venue required us to be Guidestar members....ok we signed up and asked for friends and family to choose us as they shopped. AND THEY DID!!  We have consistently received a check from Amazon Smile since last year.  And we have GOLD status on Guidestar.

http://www.ticcingawaythemiles.com
We met Brian Burns this year. He is an inspiring athlete who happens to have Tourette Syndrome. He himself received a scholarship when he graduated from high school. He said our vision and mission struck a cord with him. He has raised funds for us and the scholarship while spreading awareness about Tourette Syndrome He has our logo proudly blended with his own. We are so grateful to have him in our corner.

Raising Funds

We got some experience holding a few fundraisers this year. We had an online sales event with 

Mixed Bag Designs, and LuLaRoe.  Each netted us $250.  We signed up for eScrip. We are on Ebay for Charity. We received a $500 Grant from the Brad Cohen Tourette Foundation.  We have a lot to be Thankful for.  Next year, we will be able to give 4 scholarships. 

Thank You to everyone.  We look forward to new experiences, new supporters and new scholars!

Janine Tejeda

President, ScholasTIC Tourette's Supporters

ScholasTic Tourette's Supporters Receive a Brad Cohen Tourette Foundation Grant!

      

 The ScholasTIC Tourette’s Supporters announced receipt of a $500grant from the Brad Cohen Tourette Foundation.  The sole purpose of this grant is to fund scholarships that are awarded to a very special group of young adults:  Those with Tourette Syndrome.  “These funds will allow us to expand the number of scholarship awards that we give to students who otherwise may not qualify for a monetary award,” said Janine Tejeda, President and founder of ScholasTIC Tourette’s Supporters.  Tourette Syndrome is a neurological movement disorder that is often accompanied by OCD, ADHD and other challenges that can affect learning in elementary and middle school. Often symptoms persist through high school.  Many families face monetary challenges as they struggle to find the right providers to help their children succeed.  This award helps secure additional scholarships for those students who want to continue academic pursuits. 

 

The ScholasTIC Tourette’s Supporters organization is a non-profit entity with the mission to “provide scholarship awards to Students with Tourette Syndrome who want to go to college”.  Founded in 2015, the organization is a personal passion inspired by the Tejeda Family whose son has Tourette Syndrome.