We caught up with the brilliant and insightful Janine Tejeda a few weeks ago and have shared our conversation below.
Janine, appreciate you joining us today. Let’s start with the story of your mission. What should we know?
My son was always a noisy kid, He was exuberant, high activity, never seemed to be able to burn enough energy. He is my first and only child, so I just figured it was “boy behavior”. When he was 5 he started having some eye twitching and I thought it was allergies. I never knew that looking for some relief for his allegies would take me on a medical journey with the twists and turns it did. Over the next year, eye twitches turned into blinking, shoulder shrugging, random screeches and noises that sounded like barking and bird calls. The doctor said many little kids have these “tics” and that he would outgrow it. But he never did. It only got worse and within the year we were visiting neurologists, behaviorists and psychiatrists. By age 6 we knew he had Tourette syndrome and the rest has been a whirlwind. We sought support through our local Tourette Association of America; the Southern California chapter. We met lots of families who went through the same diagnosis. And we watched the older kids still struggle. From 2012 -2015 we tried every therapy, all kinds of medications, and behavioral interventions. School became unbearable. Most of the general public and teachers alike, did not understand the educational challenges that came along with the Tourette diagnosis. Seriously, no one was able to help us.
My son struggled in the classroom. He was diagnosed with ADHD. By 11 yo, my son was diagnosed with the typical Tourette triad of ADHD, OCD and tics along with autism. Most of the students we met with this condition had a version of the same mix of disorders.
Who is helping these kids in school? Were we the only ones struggling? Homeschooling was not an option as my son needed the socialization. He was smart enough to not need special education, but disturbing to others that he often was excused from class, outings, after school acitivities and more.
I worried that highschool would be impossible and then I let myself think about the SAT’s, essay writing, and college. I went on a fact finding mission to see if there were scholarships to help higschoolers with this specific disability get into college, or get help while in college. I found very little. Nothing was available on the West Coast. I found 2 organizations on the East coast. That is it.
Tourette syndrome affects 1:50 people worldwide. It has been stigmatized since its first identification and naming back in the 1800’s. This is the most updated statistic. Actually, when my son was diagnosed, the TAA was reporting the statistics of 1:150, then it was updated to 1:100 and now we know it is more prevalent than previously thought.
I am not one to sit back and do nothing, I brainstormed how I could help just one more kid with TS. And that is how the Scholarship organization came to be. I came up with a scholarship non-profit that would raise funds and give out 100% of the money raised to students trying to get into college. If you knew how some of these TS kids struggle through school….not because they are lazy or unable to learn…but because their own neurological system is overwhelmed with the uncontrollable noises and movements that their body and brain are enduring. The symptoms are completely unwanted and uncontrollable. Medication can suppress some of the impulses, but it never is without side effects like sleepiness (my son would fall asleep in class), restlessness and irritability, lack of focus and feelings of depression and lethargy.
This seems like a rare disease, but its not. 1:50 is on the same level as autism. The autism community seems to have a lot more support, and awareness. Not Tourette Syndrome. My intention in starting this charity was to be the beginning of building awareness as we asked for support, It would force our friends and family who wanted to help, to learn about this disorder and hopefully spread the information.
To date, we have been raising funds, advocating and supporting the Tourette Community for almost 9 years. We have raised over $100,000. and given out over 50 scholarships. The awards range from $500-$2500. We started out with 2 scholars in 2015 and doubled our numbers every year. Now we get about 30-40 applications from all over the nation and we give all our money away every year and start fundraising again as soon as possible in preparation for the next year. Spreading awareness about Tourette syndrome means that I use social media a lot. This is how I met Britney. Now she is the Vice President of our 501c3 non-profit and we are joining forces to try and grow this opportunity and this non-profit. It takes constant work and I always need help. It makes all of us in my family feel like we are doing something to help our fellow Touretters because often there is nothing more that can be done. If you want to learn more, visit our website at www scholasTIC Support.org
Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.
I am just a regular person, a pharmacist by trade. I didn’t have any special knowledge about Tourette syndrome when my son was diagnosed. I am a passionate mom who loves her son and saw a need. There is not enough awareness, knowledge or support for people with Tourette syndrome. The non-profit I started offers help and support in a unique way. Because we know our kids are intelligent and have no cognitive deficits, we want to help them move on with their life. Too many times we felt discouraged about our own child’s future and other families had the same fears. We are offering hope, and a leg up to get their life started. We want to acknowledge the struggle and give them an award for going through their unique journey that only a Touretter will understand. In raising funds we have to raise awareness so we are always talking about TS and explaining the special abilities of our scholars. We are proud to be the only non-profit or charity on the West Coast that is trying to do ANYTHING to help families and the kids challenged by Tourette Syndrome. We raise money, we give away money and its all for scholarships for these great students who have to endure difficulties within their own bodies.
Can you tell us about what’s worked well for you in terms of growing your clientele?
The most effective strategy for growing our followers and donors has been to optimize social media. Since Tourette syndrome has been so stigmatized and hidden; we used a lot of hashtags that put us in line with the National Tourette Association. We posted often, we used twitter (now X), Facebook and Instagram. We educated ourselves about SEO optimization, we learned to Blog and we sent out newsletters. We sent out hard copy old fashioned letters to potential donors and we learned about charity navigation on our own. The board has changed a few times, but the original by-laws and our mission has always been the same. The struggle is the same too: We have always needed a Community partner, We have needed grants and we continually chase these goals using new strategies that we learned by going to on-line classes. Its a continual learning process but its worth it to help our Tourette students.
Can you tell us the story behind how you met your business partner?
Currently, our board has 3 members and we are searching for more. The vice President is Britney Wolf who we met on social media. She has a great presence and lots of followers and she was like a celebrity to us as we have been “Following” her for a while. The same thing with “TwitchBeard” our social media coordinator. He has Tourette Syndrome and was passionate about getting his brand out there and we connected on social media. We are all 3 of us like-minded people who want to de-stigmatize Tourette syndrome. We want more conversations and we wantto educate the public about what Tourette Syndrome really is and what its not. Until a group of motivated individuals like us come together and change the narrative about Tourette syndrome, nothing will change. I think with social media and the non-profit, we can reach more people together, raise more funds and ultimately help more students get the acknowledgment they deserve, the support they deserve and a brighter future.
Contact Info:
- Website: www.scholasTICSupport.org
- Instagram: ScholasTIC_supprt
- Facebook: www.facebook.com/scholasTICSupprt
- Twitter: @ScholasTICSupp1
Image Credits
NOt sure, But the Tourette Association of America, So Cal Chapter on the photos that show that, All other photos are mine.