Scott Loeff on Tourette Syndrome Advocacy

An interview with Scott Loeff on Tourette Syndrome Advocacy: Excuse me sir do you need a Tissue. That is because my main Tic all my life has been a sniffling on June 14, 2024.


Please tell me a little about your background.

I am Adult with Tourette Syndrome that Was DX when I was 13.  I worked in Human Resources for 32 years and I am now retired. I founded the camp back in 1994.


Can you tell me more about your organization?

We run an all-volunteer staffed one week summer camp for Children with Tourette Syndrome and Obsessive-Compulsive Disorder.


What is your passion and how did you get involved in Tourette’s awareness?

My passion is helping children build up confidence so they can advocate for themselves and spread awareness.


What type of goals do individuals with Tourette’s have when working with you?

That they build up self-confidence so they can advocate for themselves and feel accepted


What type of training and how long are the programs?

Our summer camp is for one week each summer. Our staff training is run the day before camp starts


 What effect can it have on an individual with Tourette’s?

We have had former campers tell us a year later that camp was a life changing event for them.  They gained confidence and realized they were not alone.


What would you like to see as a future goal for your programs?  

Expanding our camp program to include more campers and programs options.


What events do you participate in?

We have hosted children’s programs at Tourette Conferences both locally and in the past the national Tourette Association Conference


How does this also assist the caregivers?  

Our camp program does act as a respite from their child. They know their child is in a fun and safe environment.


How can someone get in touch?  What is your website?


How can others also become advocates for awareness?

Spread the word about Tourette Syndrome when the opportunities arise. By passing out literature or providing useful websites


What is Tourette’s?

Tourette is commonly known as the disorder where people swear or say other socially unacceptable words. The truth is that less than 10% of the Tourette populations has this tic


In your opinion what is the key to effective advocacy?  

Providing useful information in a concise presentation. Being respectful to the person you are trying to educate.


How can we better fundraise to support a cure for Tourette’s?

Support and give when you can to existing fundraising appeals.


What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?

I have been running for the last 30 years and started doing marathons in 2014.  It is a way to focus and relieve stress.


Why should people who don’t have Tourette’s care about this?  

That a person tells you that they have Tourette’s, and they say that the motor or vocal tic is a tic and they can’t help it. Believe them without questioning it.


 Have you had any family members or relatives affected by Tourette’s?

No just myself.


If you had one song that would tell us more about you or represent your life, which song would it be?

Twitch and shout.


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?

You are not alone