The Tourette Alliance held its 1st Annual Conference on Tourette Syndrome, Tic Disorders, and Associated Conditions on August 5th & 6th, 2016 in Lisburn, NI. The Tourette Alliance’s inaugural conference addressed educational, medical, and social issues. The event featured lectures, interactive sessions, workshops, and support networking events. Everyone in attendance was given the opportunity to work together to tackle the issues faced by families, medical personnel, advocates, and support personnel. Conference events touched on the topics of acceptance, advocacy, and awareness for Tourette Syndrome, Tic Disorders and their associated conditions.
We would like to take this opportunity to thank our conference host, Pond Park Elementary School in Lisburn, for its generosity, with a special thanks to Geoffrey Cherry.
Advocacy, Education, and Inspiration on Day One
This conference kicked off on the morning of Friday, August 5th, with a breakfast where attendees met speakers and Youth Representatives. The session included an inspirational introduction to the Tourette Alliance Board of Directors led by Chairperson Suzanne Lavery. Her address covered the creation of the Tourette Alliance and plans for the future of the organisation.
Following the breakfast, educators, support personnel and parents gathered for the full-day workshop presented by international advocate, teacher, trainer and author Susan Conners. Conners’ presentation was designed for education professionals and staff of all kind, including special needs teachers, school administrators, Occupational Therapists, Speech Language Specialists, Counselors and Psychologists. The workshop addressed Tourette Syndrome, Tic Disorders and their associated disorders and covered a wide range of topics, including:
- The behaviors associated with Tourette Syndrome, ADHD, OCD and learning disabilities;
- Functional Behavioral Assessments for children with neurological disorders; and,
- Appropriate school services and accommodations, specific classroom strategies and techniques in working with children who have Tourette Syndrome and Tic Disorders.
- An indepth discussion of commonly occurring co-occurring disorders associated with TS including ADHD, OCD, Sensory Processing Disorder, Anxiety Disorders, Dysgraphia, Social Skills Delays, Executive Dysfunction Disorder and Learning Disabilities.
The workshop concluded with an interactive Youth Panel led by Conners that allowed attendees to ask questions of Tourette Alliance Youth Representatives Kyle Cooper, Connor Harrington, Alex Logan, Ian Henry and Willow Daly-Griffen.
The workshop was followed by a dual track of Educational Advocate Training led by Conners and Youth Representative Peer to Peer Training led by Advisory Board member Connor Harrington, assisted by Alex Logan, Ian Henry and Willow Daly-Griffen.
The Educational Advocacy training led the way for Tourette Alliance Educational Advocates who will be helping spread acceptance and awareness by supporting children in an educational setting and providing In-Service Training sessions for schools.
The Peer to Peer Training also proved important for acceptance, advocacy and awareness as the Tourette Alliance Youth Representatives were trained in a peer-to-peer mentoring program, the first session over the two-day conference for these representatives.
Jaxon Kramer, Motivational Speaker
The morning of August 6th began with a meet-and-greet breakfast attended by Tourette Alliance Board members, families, lecturers and Youth Representatives.
One of the biggest highlights of the conference was the riveting interactive workshop by Motivational Speaker Jaxon Kramer on “Living With Tourette Syndrome.” Many with Tourette, including many of the young members of the Tourette Alliance in attendance, find themselves feeling alone and suffering from anxiety and depression.
Jaxon’s lecture was both encouraging and educational and his use of imagery, imagination and humor to show that living with Tourette Syndrome is not just possible, but how life can be fulfilling and joyous left the attendees enthralled by his ability to change their perspective, many expressing that his presentation was a life changing experience.
Jaxon’s presentation was inspirational as well as thought provoking and encouraged attendees to look beyond the tics and other manifestations of this spectrum disorder and see the person for who they are and not just the symptoms of their disorder.
Following Jaxon’s session, Susan Conners presented on how Tourette Syndrome, Tic Disorders & Associated Disorders can impact school performance, behavior and social/emotional well-being. Susan worked to dispel the many myths which often cause misunderstandings and confusion in the classroom and how educators can better help students achieve to their potential. The lecture, which included a question and answer session, also covered classroom accommodations, identifying appropriate school services and support for educators, support staff and parents.
Treatment Options, Dr. Dierdre Peake
Dr. Dierdre Peake, a neurology consultant at Royal Belfast Hospital for Sick Children in Belfast as well as the Chair and founder of the Northern Ireland Epilepsy Forum, discussed issues on Tourette Syndrome and Tic Disorders from a local perspective. Dr. Peake, who’s recently started a joint tertiary Tourette/Tic Clinic with Dr. Mark Rodgers, a consultant Psychiatrist, spoke on referrals to CAHMS and how they might offer treatment for associated conditions, such as Anxiety and other issues, that many families of those with these disorders face.
The attendees were given the option of several lectures on a dual track over the course of Saturday afternoon. Author and lecturer Jessamine Daly-Griffen was assisted by Molly Logan-Bisson in presenting a Holistic Approach to Tourette Syndrome and Tic Disorders. The lecture was filled with practical advice on addressing many of the issues that families of those with Tourette Syndrome, Tic Disorders and their associated conditions face including explosive anger, self-injurious tics and more. On the second track, Lisa Henry, of the Texas Chapter of the Tourette Association of America, held a workshop on creating and maintaining Tourette Alliance Support Groups.
Keynote Speaker Dr. Andrea Cavanna
Keynote Speaker Dr. Andrea Cavanna presented an overview of Tourette Syndrome and Associated Disorders with an update on medical and behavioral treatments, current and future research. Dr. Cavanna began with an impressive lecture on the history of the discovery of Tourette and its early treatments. He spoke on all of the co-occurring conditions, including the latest updates on research showing the possible pathophysiology of Tourette and further studies delving into that topic with more precision. He also spoke about the inability of researchers to replicate an earlier study on P.A.N.D.A.S., and new research looking into possible connections between Autoimmune disorders in the mothers of those with Tourette Syndrome. After his lecture, there was a question-and-answer session touching on anxiety, social issues, educational issues and more.
Dual Tracks for Day Two
The afternoon dual track sessions were split. One featured Tourette Alliance Board of Directors member and retired Educator Deborah Anderson’s absolutely moving discussion on Transitioning to Adulthood. A second focused on the Tourette Alliance Youth Representative Training, presented by Dr. Jane Zwilling and Jen Zwilling with the assistance of Jaxon Kramer.
The Conference closed with a moving presentation by Tourette Alliance Board member and retired educator Deborah Anderson on “Transitioning to Adulthood.” Deborah’s video story focused on her son’s journey and the odds their family faced with little help and information. It was this struggle that inspired Deborah to help others and, ultimately, to become a founding member of the Tourette Alliance. Her moving, personal story brought many to tears.
The Tourette Alliance is grateful to all who attended our 1st Annual Conference. We look forward to seeing everyone in the Autumn of 2017!
Some feedback from the 1st Annual Tourette Alliance Conference on Tourette Syndrome, Tic Disorders & Associated Conditions
What Did Attendees Say They Found Most Helpful & Overall Commentary On The Conference:
“Accommodations in school, Personal anecdotes, The experiences of the youth panel, Social/Emotional part, Sensory processing information.” – Psychologist
“Jaxon was excellent! Very funny, down to earth and relevant. Thank you!” – Parent
“The strategies to employ in the classroom in order to alleviate the distress of the child. Susan’s personal anecdotes. The youth panel’s personal experiences.” – Educator
“Deborah’s story was heartbreaking and encouraging. I would love to be able to share the video story if it’s available!” – Parent
“I learned more in two days than in the 15 years since my son was diagnosed. All the speakers were amazing but perhaps as the mother of a young man with Tourette Syndrome, I found Jaxon’s talk particularly interesting and inspirational.” – Parent
“Jaxon helped me learn that life is the way I create it. I can accept the good and the bad. I can accept other’s views about Tourette Syndrome and about my tics and that there are things that have happened and these are things I cannot change or control. He taught me to live life to the fullest, and basically not to be stuck behind the crowd just because I have Tourette Syndrome.” Young Adult With Tourette
“The fact that the presentation was given by people affected by Tourette makes it more real and personal. There was not one thing that was more helpful than another. Continue to do this and don’t change a thing other than increase awareness and understanding of Tourette and Tics.” – Educator
“All the information provided, it was amazing. Keep doing what you do, raising much needed awareness.” – Parent
“The examples and real life stories of people of all ages with TS. The practical ideas and strategies for using within the classroom. The explanations of the various conditions and disorders and how they are linked. The Tourette exercise.” – Special Needs Educator
“It was a great privilege to have Jaxon speak at the conference. He was very inspirational to all who attended, he filled the room with positive feelings and brought a lot of motivation to all of the participants with TS and empowered our young people continue achieving their goals in life no matter what struggles thier TS brings them. He gave them a vision of a life with Tourette being a positive one and they can be what they want to be. He was truly amazing.” – Parent
“Great overview. Many thanks!” – Parent
“The examples and anecdotes used by Susan to demonstrate her points.” – Psychologist
“The various real life examples of the conditions and the ways used to alleviate it.” – Parent
“Real life examples”. – Parent
“Personal experiences of Sue and the Youth Representatives”. – Parent
“All of the knowledge presented on Tourette Syndrom, how the symptoms overlap with the ASD, ADHD etc. – Signposts that I can study to get more research and advice points as to where to go to get help/advice/support. Susan is an excellent speaker, very easy to listen to. Her examples and experiences make the conference light hearted but also helpful and beneficial. Thank you!” – Educator
“Information on comorbid issues, practical applications & FBA’s. Well done on the youth panel and their brave choice to speak out! Thanks so much for organising this! So encouraged and inspired!!” – Management: General Educator/Special Needs Educator
“The amount of information about Tourette and related conditions – being able to relate them to my own child. Very helpful. The young people talking about their lives gives me great hope! Thank you!” – Parent
“The overall knowledge of Tourette. The reassurance that a full life can be lived with many achievements. Young people are an inspiration!” – Parent
“Tics information and the surrounding factors. Thank you for the awareness.” – Parent
“The anecdotes Susan shared of real experiences & issues and how they were overcome.” – Educator
“Youth Panel was amazing!” – Parent
“Susan’s presentation was excellent! Very useful and relevant.” – Parent
“Case study examples by Susan Conners. Meeting other parents.” – Occupational Therapist/Parent
“Learning about the overlap that TS has with other disorders and seeing how some of the children I’ve taught have had these traits but there has been a struggle with support and diagnosis. Thank you!” – General Educator
“Jaxon kramer was the opening speaker on the family day. He opened with such energy and enthusiasm I was immediately excited about what the rest of the day would bring. His honesty and sense of humour helped me see another side to my son’s diagnosis…like seeing past the troubles to a future brighter than I thought it could be. I only wish I had brought him along to see Jaxon speak, maybe next time!” – Parent
“Learning about the comorbidities of so many other conditions and putting Tourette into the spectrum. Also ideas for solutions to difficulties in the classroom.” – Speech Therapist
“Loved the Youth Panel!” – General Educator/Social Worker
“I found all aspects great and so interesting! Very good real life examples.” – Special Needs Educator
“Very useful to hear about the overlap of the comorbid disorders. Also a great range of alternative measures to take to reduce the severity of tics. The use of the Tourette test was a great way to get inside the mind of a child with Tourette and empathize and understand their struggle. Much enjoyed and great strategies taken from today. Thanks!” – Special Needs Educator
“Jessamine was really really good, would be great to get a copy of this presentation!” – Psychologist
“Dr. Cavanna was very informative and interesting!” – Parent
“Excellent conference – very well organized, relevant and interesting presenters. Lots of useful information! Lovely lunch and scones!” – Parent
“Thank you for the fantastic and amazing work you do for people with Tourette and Tic Disorders and your special kindness!” – Journalist
“I took inspiration from Jaxon. He said that there is no such thing as a smooth mountain, if you want to make it to the top, there are sharp ridges that must be stepped over, and I realized that while things have been hard for me I can still achieve whatever I set myself to. Thank you Jaxon for everything!” – Teen With Tourette
“Thank you so much! I am a little in shock that there is something here for us!” – Parent
“I can’t thank Tourette Alliance enough for today – I really learned new skills to help us along this long road we are on. Thanks!” – Parent
“As a mum I will always remember Deborah’s story and wonderful advice. Thank you!” – Parent
“Amazing people, excellent conference, really BIG well done!! Hope I can make it again next year, fantastic job!” – Educator
“What an amazing two days. Met some amazing people and made friends for life. Thank you!” – Young adult with Tourette
“Thank you for bringing everyone together! The support is here now. You have been a great resource!” – Parent
“Thank you everyone so much for everything you’ve all done. I definitely feel part of a community now that I have the help and support of everyone involved in the Tourette Alliance. So, thank you so much to everyone!” – Young adult with Tourette
“Deborah’s presentation was amazing!! My children with Tourette are teenagers and seeing how much of a difference proper intervention can make in their lives really inspired me to keep asking for help and not be afraid to stand up for them!” – Parent
“Well done to you all. We as a family feel humbled at the help we’ve received!” – Parent
“I just wanted to say a heartfelt thank you for caring for our daughter today. She told me how you all helped her feel comfortable and able to stay at the conference. We have found the two days very educational and I have to say that there have been a few emotional tears from us both. Thank you so much!” – Parent
“Wow! What an amazing couple of days. I can’t thank you all enough. You have made a huge difference to me and my family. Such insight gained from all of you. Enlightening!” – Parent
“Guys, thank you so much for everything! Getting to know you all has been amazing and these two days are definitely two that I won’t ever forget. You have really opened my eyes and I feel like I’ve made friends for life – I am So glad I had this opportunity!” – Family Member of Child with TS
“I can honestly say it’s been a huge help! It was great for me to see that there are other people with similar things like this living in Northern Ireland as it feels like I am the only one a lot of the time. Your website has also been a huge help to me, and because of it I’m just now finding out what intrusive thoughts are and now have an explanation as to what those gruesome images are that have been popping into my head since I was a kid. I just want to say thank you so much, you have really helped even though I only discovered you a few days ago!” – Young Adult with Tourette Syndrome