Meet Matt Malley and his Smartwatch that Reduces Stress & Tics
Matt was diagnosed at the age of 5 with severe Tourette plus. He has managed to develop successful strategies to reduce stress and symptoms through music and drumming, both of which are known to be calming.
For the past 3 years, he has been working with engineers inventing a fun, music, percussion and sensory smartwatch that will help the thousands of students, teachers and parents by reducing stress and thus symptoms.
Please take a minute to view the prototype (the final version will be a smartwatch style) at https://echolife.us
Leave a message in Contact Section at the top, or comment so he can show investors that people are interested in this device.
Meet Suzy Eppling - Remote Occupational Therapist
Suzy has been practicing as a CBIT therapist, specializing in tic disorders. She practices primarily in Massachusetts in collaboration with Boston Children's Hospital, but now also has a New York license and is hoping to support more people with TS via telehealth.
If you are interested in CBIT therapy, visit www.CBITtherapy.com
For families in need of support and please feel free to reach out to email@example.com with any questions or concerns.
Healthy Brain Network Study - EDUCATE
The Healthy Brain Network has a study which they are actively enrolling right now. Those who qualify get fast-tracked through the waitlist and evaluation. Children who are aged 6–11 and are struggling with reading or math may qualify to be part of the Healthy Brain Network + EDUCATE combined program.
The combined program offers these children the opportunity to have a comprehensive evaluation AND receive 12 weeks of at-home reading and math skill-building computer games — all at no cost.
As usual, it’s easy to refer families to either of the two options — just share the appropriate study flyer with them:
Children ages 5–21 who are not experiencing reading or math difficulty: Share the Healthy Brain Network program flyer with the family.
Children ages 6–11 who are experiencing reading or math difficulty: Share the Healthy Brain Network + EDUCATE combined program flyer with the family.
If you or your colleagues are working with children struggling with math or reading, this could be a tremendous opportunity for them and their families. The games featured in the EDUCATE program help improve math and reading skills when children use them at school. Now the hope is that they also work when children play these skill-building games at home.
Contact MJ Bushey with any questions via email or at 646.625.4390.
The World's First Genetic Sharing Resource
HOW CAN I HELP?
Email firstname.lastname@example.org to become part of this breakthrough research. The TIC Genetics study is activily seeking families to donate their DNA to be studied. Simply email them with your interest and they will send you further information.
You can also donate to the Faith W. Rice Legacy Fund, which helps NJCTS continue the support of this very important research. A program that was very near and dear to Faith's heart.
Webinar Series on Tourette Syndrome
Tourette Association of America Center of Excellence, The Baylor College of Medicine Parkinson’s Disease Center and Movement Disorders Clinic, is pleased to host a webinar series on Tourette Syndrome.
The three-part series sheds light on the educational, emotional and medical aspects of Tourette Syndrome. Please see below for the upcoming webinars and register today!
The Medical Aspects of Tourette Syndrome
Thursday, July 22 at 12:00pm CST - REGISTER HERE
The Emotional Aspects of Tourette Syndrome
Thursday, August 5 at 12:00pm CST - REGISTER HERE
The Educational Aspects of Tourette Syndrome
Thursday, August 12 at 12:00pm CST - REGISTER HERE
Child Mind Institute Offering No-Cost Comprehensive Development Evaluations
For toddlers ages 18–48 months through the Autism Center: Research Lab.
Meet Suzanne Sanchez, Occupational Therapist
In my 20+ years as an Occupational Therapist, I've gained a wealth of knowledge through extensive education and experience that allows me to be a highly effective therapist working with children and young adults. Most recently, through the Tourette Association of America, I completed certification in Comprehensive Behavioral Intervention for Tics (CBIT). For more information on CBIT and/or to schedule services,
Please feel free to reach out at 516-535-9890 or via email at cbitOTinfo@gmail.com
Adult Webinar Series: Navigating Romantic Relationships, May 4, 7pm
A healthy romantic relationship requires dedicated partners, patience, and time. When one of the partners is plagued with a chronic condition, such as Tourette Syndrome, the relationship can be tested. Please join Dr. Katie Kompoliti and Eric McGowan as they reunite to discuss the intricacies of navigating a romantic relationship.
Dr. Kompoliti is the Educational Director of Movement Disorders, as well as the Director of the Movement Disorders' Fellowship and Center of Excellence on Tourette Syndrome and Tic Disorders at Rush University Medical Center. She is an accomplished author, as well as an experienced principal investigator in research focused on several therapeutic areas, including studies to evaluate the safety and efficacy of new compounds to treat Tourette Syndrome, Parkinson's disease, functional movement disorders and dystonia.
Eric McGowan has a Bachelor of Science in Acoustics from Columbia College in Chicago and a Master of Arts in Architecture from the University of Kansas. He first became involved with the TAA Southern California Chapter in late 2016 and joined the Board of Directors in March 2018. Eric is passionate about helping those living with TS through advocacy, organization, and attendance of Chapter events, and as the director of Camp George – a sleep-away camp for youth with TS and their families.
How adults develop and maintain romantic relations
Navigating dating and romantic relations for adults with TS
Challenges and limitations in navigating romantic relations for adults with TS
How socio-emotional experiences with family and peers influence dating.
Meet Speech Pathologist, Jessica Salas
Jessica Salas M.S. CCC-SLP is a graduate from Teachers College, Columbia University. She is a bilingual speech-language pathologist who provides services in English and Spanish, and has been practicing speech therapy in the New York City area for over a decade.
Jessica specializes in the evaluation and treatment of multi-lingual or multi-culturally diverse children, and understands the importance of being able to make a differential diagnosis between a disorder, and a potential delay due to cultural upbringing. While working with children of all ages, she identified executive function as the foundation for all learning. She has developed a real love for integrating mindfulness activities to engage her clients and encourages them to become active participants in the goal-setting process of intervention.
Jessica has experience in treating areas of communication disorders including: articulation and phonological disorders, expressive/receptive delays or disorders, fluency, written language expression, reading comprehension, autism spectrum disorder, apraxia, and limited social skills. She uses effective research based methods and strongly believes in meeting the needs of each client and their families in a collaborative, holistic, and integrated manner.
Please feel free to reach out to her at email@example.com or (646) 942-1451.
View Recordings of the Cutting Edge Topics in Tourettes Conference
Huge thank you to LI TAA Youth Ambassadors Aiden, Charlotte and Pierce, Young Adult Ambassadors, Becca and Chris and Adult Ambassador, Dave for their valuable participation as panelists.
To view the Conference, please click here:
New Dates For Virtual Leadership Academy
The NJCTS Tim Howard Leadership Academy is designed to develop self-leadership, advocacy skills, and resilience in teens with Tourette Syndrome and its associated disorders. Of course, we are hoping to be able to once again meet in person, but in the meantime we are planning a spectacular virtual event. We encourage all of you to join us to connect with others in the TS community.
Eligible participants are entering sophomore, junior or senior year of high school in the Fall of 2021 or will have completed senior year of high school by June 2021. No application is required.
Registration is coming soon, but if you would like to be one of the first to sign up, fill out the form below to be notified.
Free 3-Day Educational Sessions Around Tics and TS
The Tourette Association of America (TAA) is hosting a Virtual Conference on May 14 – 16, 2021.
This three-day free event provides numerous web-based educational sessions to learn more about the complexities surrounding Tourette Syndrome and Tic Disorders. Continuing Education Credits* are available, at an additional rate, for a variety of sessions listed below.
Interested in showcasing your organization? There are various exhibitor and sponsor opportunities that will reach thousands in the community across the US.
11:00am EST: Research Symposium*
11:00am EST: Newly Diagnosed Seminar
4:00pm EST: The Present and Future of Therapeutics in TS*
5:00pm EST: Expressing TS Through Art
6:00pm EST: Parents with TS Support Group
7:00pm EST: Self Esteem - My Life With Tourette
8:00pm EST: Conference Launch
11:00am EST: Keynote - Ross Greene
12:00pm EST: Tourettic OCD: Exploring the Tourette/OCD Interface CE*
12:00pm EST: Understanding Oppositional Behavior
12:00pm EST: OCD & ADHD with TS
1:30pm EST: Finding the Superhero Within: Your Amazing Basal Ganglia!
2:00pm EST: Emotional Overload: Understanding Non-Tic Behaviors in Tourette Syndrome*
2:00pm EST: Integrating Creative Strategies to Enhance CBIT Treatment Engagement*
3:00pm EST: Let's Put the Tics in TikTok: How to be a TS Advocate in the Digital Age
4:00pm EST: Translating Evidence-based Interventions into Clinical Practice*
4:00pm EST: Tourette Syndrome and Young Children
5:00pm EST: Parenting Your Superhero: Parent Support Group
6:00pm EST: Tourette 101 for the Community Practitioner*
6:00pm EST: What Am I Missing? IEP/504 Plan Process Simplified
8:00pm EST: Musical Performance
11:00am EST: Raising Tourettes: A Family Perspective for Educators*
11:00am EST: Dealing with Employment
11:00am EST: Taking Tourette to Middle School - For Children
12:30pm EST: The Big Sad
12:30pm EST: Taking Tourette to Middle School - For Parents
1:00pm EST: Tourette & Law Enforcement
1:00pm EST: Handwriting Deficits in children with Tic Disorders*
1:30pm EST: Developing & Maintaining Friendships
2:30pm EST: Ask the Youth Ambassador Burning Questions
3:00pm EST: Classroom Strategies and Accommodations*
3:00pm EST: The Diverse Experience of Living with Tourette Syndrome
4:00pm EST: UptoMe: A Tool for Self-Advocacy
5:00pm EST: Taking Control: Daily Strategies
5:00pm EST: Instructional Teaching Strategies to Support Students with Tourette Syndrome*
NJCTS Announces 2021 Program of Webinars
NJ Center for Tourette Syndrome and Associated Disorders has announced the topics of their Wednesday Webinars series for 2021 featuring presentations by medical and mental health professionals, education specialists, and other leaders in their field.*
01/13/21 – Using Positive Psychology to Find More Happiness Everyday
02/03/21 – Outgrowing the Child Neurologist: Transition in Tourette Syndrome
03/03/21 – Anxiety & Worry
04/21/21 – Importance of Play
05/26/21 – Nature & Mental Health
08/18/21 – Trauma Informed Classroom
09/22/21 – Medical Marijuana
10/06/21 – Mental Health in Media/Stigma & Stereotypes
NJCTS’ free Wednesday Webinar series was launched in 2008 and draws an audience from across the United States. The series features online seminars for parents, educators and professionals on topics of interest to the Tourette Syndrome and associated disorders community, such as anxiety, OCD, sensory issues, bullying, school accommodations, and much more.
To sign up for a webinar, or browse an archive of past webinars, visit njcts.org/webinars. A professional development certificate or a certificate of attendance for attending any of these live webinars is available for educators at a nominal fee.
*Topics are subject to change. Keep an eye on our website for the latest info.
Sleep-Wake Rhythms Survey in Children with Tourette Disorder
Researchers in the UCLA Department of Psychiatry are seeking children ages 10 to 17 with Tourette Disorder or other chronic tic disorders, and their parents to participate in an internet survey assessing sleep-wake rhythms.
The survey includes questions on demographics, medical/psychiatric history, tic severity and course, sleep-wake rhythms, general sleep habits, and emotional and behavioral functioning. Parent and child questions are presented in the same survey. Upon completion of the survey, participants will be able to enter a drawing to receive 1 of 20 $50 Visa gift cards.
Survey Link: https://www.ctrc.medsch.ucla.edu/redcap/surveys/?s=LP3RD7AWEE
Tips for the 2020-2021 School Year
This school year is vastly different as we experience different learning models with COVID-19. Whether classes are held all in-person, a hybrid model, or all remote, the Tourette Association of America is here to provide you with resources and tips for every type of classroom setting.
To help guide you this school year the TAA’s Education Advisory Board co-chairs have offered advice on best practices that will help reduce anxiety and give some predictability and routine to the school year.
Visit https://tourette.org/learning-in-the-2020-2021-school-year/ to get many practical tips and resources.
Child Study Center Webinars
The Child Study Center, part of Hassenfeld Children’s Hospital at NYU Langone, hosts frequent webinars to offer insights, practical tips, and advice to parents and caregivers. Webinars cover topics such as effective parenting, managing stress, and improving emotional health. The webinars are hosted by expert clinicians.
Previous sessions are available from the Child Study Center webinar archive.
For information on upcoming workshops, please visit this page.
Is your child struggling to get and stay organized for schoolwork during in-person, virtual, or hybrid learning?
Many students struggle to stay organized, manage their time, and plan activities. These organizational problems can cause schoolwork difficulties and create headaches at home. Switching to virtual schooling can make organizational challenges even harder for some.
If your child is in the 3rd, 4th, or 5th grade and has one main teacher, your child may qualify for a study that includes clinical treatment conducted over video and brain imaging.
No-cost brief assessment
Two brain magnetic resonance imaging (MRI) scans
No-cost 12-week individualized treatment to improve organizational skills based on an empirically validated program adapted to meet demands of both in-person and virtual schooling
To see if your child might benefit from Organizational Skills Training, please complete a short quiz.
For more information about this recruiting study, contact us at 212-404-3770 or firstname.lastname@example.org.
Ronald E. Stiskin & Associates, P.C.
Specializing in Special Education & Disabilities Law
Ronald E. Stiskin is passionate about assisting families and individuals in transition. Whether securing educational services for children with special needs; planning for the future of disabled adults; or helping seniors and their families identify their next steps, Ronald is committed to guiding his clients to their best outcome.
Ronald has attended several TS events and has educated himself with what many familes and children experience when faced with Tourette Syndrome.
We have formed an alliance with Ronald and his firm. You can visit their website at Ronald E. Stiskin & Assoc.
Contact by phone 212-939-7570 or email at Ron@stiskin.com
Other Related Organizations & Programs
Tourette Association of America
Long Island Tourette Association
Tourette Association Hudson Valley Chapter
NJ Center for Tourette Syndrome and Associated Disorders
Job Accommodation Network: a Resource for Questions about Workplace Accommodations
Child Mind Institute
An independent, national nonprofit dedicated to transforming the lives of children struggling with mental health and learning disorders.
Child Mind Institute is currently offering no-cost psychological evaluations in Harlem and Staten Island. Click here for more information.
Resources for families of children and adolescents with learning and attention issues
NYU Child Study Center
NYU Langone Tourette
Tics, Tourette Disorder & Trichotillomania Program | NYU Langone Health
PANDAS Network (Pediatric Autoimmune Neuropsychiatric Disorders)
Weill Cornell Tics and Tourette's Pediatrics Program
Mt Sinai Tics and Tourette's Clinical and Research Program
NY Connects provides free, unbiased information about long term services and supports in New York State for people of all ages or with any type of disability
Office for People with Developmental Disabilities (New York State)
Camp Free to Be Me hosted by Camp Kinder Ring
Summer camp for children with Tourette
Tics and Tourette Disorder: What Families Should Know to Get the Help They Need
The OCD, ADHD and Tic Disorder Triad
Tourette Syndrome in the Classroom: Collaboration and Accommodations for a Successful School Year
Planning the First Visit with the Doctor
Dr. Miri Rosen
Dr. Elkhonon Goldberg
Tourette's, ADHD, and Cerebral Hemispheres: Presentation by Dr. Goldberg
Manhattan Behavioral Medicine
Dr. Joohi Jimenez-Shahed
Resources & Events During the Pandemic
Please find a list of resources below gathered by the NY State Tourette Consortium to help children and adults during the pandemic. Stay safe and healthy!
SUGGESTIONS FOR SELF-CARE DURING THE COVID-19 PANDEMIC
Washing your hands, wearing a mask when you are in public areas, and practicing social distancing are great practical ways to take care of your physical health during this time.
Remember, it is also important to take care of your mental health!
Be kind to yourself, and to those around you.
Permit yourself and others to be human and imperfect.
Limit your social media and COVID-19 coverage intake.
Allow yourself a fixed amount of time (< one hour) to worry then move on.
Allow your children a fixed amount of time (< two hours) to play video games then try a new activity.
Stick to (or create) healthy lifestyle habits: Daily exercise, nutritious meals, consistent bedtime and wake-up hours.
Create and stick to a daily routine for yourself and your family.
Reach out to and nurture your support networks.
Focus on controlling the things that you can and letting go of those things that you cannot control. Know the difference!
Develop a toolkit for self-care: fun activities, relaxing activities, stress-relieving activities etc.
Find time to laugh about something at least once a day.
TELEHEALTH SERVICES FOR YOUTH AND ADULTS WITH TIC DISORDERS
The Long Island Center for Tourette and Northwell Health
Telehealth services including new consultations and ongoing care are being provided as appropriate through the Long Island Center for Tourette and throughout the Northwell Health System.
For further information call: Ms. Florentina Lazaroaie, Patient Navigator
Phone: (516) 365-0587 Fax: (516) 365-1909
Mount Sinai Hospital
Therapy and Medication Management
Clinical Research Trials
Phone (212) 241-2135
Call 646-962-2820 for information about telehealth services
University of Rochester Medical Center
Telehealth services are being provided where appropriate throughout the URMC system. Please contact the relevant office below for information and appointments:
Department of Neurology - Pediatric Neurology (for children < 18 years old).
Phone: (585) 275-2808 (585) 275-3683
Department of Neurology - Movement Disorders (adults)
Phone: (585) 341-7500 (585) 341-7510
URMC Pediatric Behavioral Health & Wellness: Child & Adolescent Outpatient Services
Phone: (585) 279-7800
URMC Mental Health & Wellness: Adult Outpatient Services
Call: (585) 273-5050
WEBINARS/ONLINE SUPPORT & RESOURCES:
Northwell Health: “Parenting During Covid-19”
Northwell Health offers practical parenting advice in this approx. 20 minute talk on YouTube, presented by Child Psychiatrist Dr. Vera Feuer, MD
See also the Northwell newsletter article, “Parenting in the Age of COVID-19”
Weill-Cornell Medicine: Pediatric OCD, Anxiety, and Tic Disorders Program (POCAT)
“Parenting Strategies for Challenging Times Webinar Series”
Navigate to this site to access free, previously recorded webinars and learn about upcoming webinars:
New York Presbyterian Youth Anxiety Center
“Building Resilience in Challenging Times”
Free webinar series for young adults, ages 16-28, and parents of young adults.
Every Tue & Thursday, 4/30 – 5/28, 8:00 p.m. – 8:45 p.m. EDT
Navigate to this site to access free, previously recorded webinars and learn about upcoming webinars: www.nyp.org/youthanxiety/important-notice
Golisano Children’s Hospital: General Resources for Families – Parents and Children
Golisano Children’s Hospital at Strong (Rochester, NY) offers the following landing-page with links to various resources for families:
International OCD Foundation (IOCDF)
Some individuals with Tic Disorders may have co-occurring obsessive-compulsive symptoms. The IOCDF has established a variety of resources including weekly town halls and online support resources, and tips for how to “Listen to the CDC, not the OCD”
1) ONLINE LEARNING
Wide Open School - “Schools are closed. Minds are wide open”
A free collection of online learning experiences for students of all ages, grades, and needs.
The Child & Family Institute
Our team of academic tutors, coaches, and educational consultants offer customized virtual learning sessions, home schooling and homework help, and executive functioning assistance.
For enquiries, send email to: email@example.com
Various Learning Resources:
10 Best You Tube Educational Channels for Kids:
Free audio books for kids:
Scholastic Learn at Home:
Helping You and Your Family Deal with Covid-19:
At Home with Special Needs Children:
150 Ideas for Sensory Home Learning
Some worksheet activities on Google Drive & DropBox:
Google Drive: https://drive.google.com/file/d/1MaM2RBrqyDeyKFCG8impDgfuZ8a2tIZ-/view?fbclid=IwAR19HtNK8XYG1IVI6HFp_ujAc3zDgescCrHp9UYUGPWccszSynWCLsLFMDA
Drop Box: https://www.dropbox.com/s/o8p218ps2yxugo7/Blank%20316.pdf?dl=0&fbclid=IwAR2xJxlquXD8rIjHPVpQaljQTdOCJzPnIEvAeFZ8_BbANx3FIzZlfyHkqP0
How I’m feeling
All About Me
Living Through History
Coronavirus Time Capsule
Tips from Dr. Helene Walisever, PhD (Co-Chair of the NY Hudson Valley Chapter of the Tourette Association of America, and TAA Education Advisory Board Member)
Dr. Walisever provides the following tips:
· Families can contact their child’s school in writing to request Special Education Services that their child may not be currently receiving virtually. If the school is unable to meet the child’s needs, parents may consider writing a “10-day notice letter” of their intent to obtain private education services for their child, if school is unable to meet the child’s needs. Information about this type of letter, and the process for preparing one are available at various sites, including:
· If there are any work samples that parents think will document either regression or lack of progress they should save those and set those aside as well. This documentation may help in future, if requesting compensatory or additional services from the district to make up for the lost instruction time, IEP services, etc. Parents can also log the time spent in tutoring their child, particularly for special education services that are typically provided to the child by the school district.
Council of Parent Attorneys and Advocates, Inc. (COPAA)
COPAA has many resources for parents of students with special education needs during this time, including guidance to families on how to proceed when the school district does not continue special education services at this time.
· COVID-19 Landing Site: https://www.copaa.org/page/covid-19
· COPAA Statement on Student Rights Under IDEA During the COVID-19 Outbreak: https://www.copaa.org/news/493349/COPAA-Statement-on-Student-Rights-Under-IDEA-During-the-COVID-19-Outbreak.htm
Parent Training and Information Centers
PTICs serve residents through the country, to support children and youth with disabilities, families, professionals, and other organizations that support them. Educational advocacy is a large part of the PTIC mission. To find the PTIC for your area in NY State, navigate to this website and scroll down to find the listings for NY State:
From the Wrightslaw website, “Our goal is to provide individuals with the knowledge and skills to advocate effectively for children with disabilities”
3) STATE AND FEDERAL EDUCATION DEPARTMENTS
New York State Education Department:
Guidance for P-12 Schools, including many memos and resources, including for students with special needs
Guidance on Continuity of Learning
NY State Board of Regents is providing live-stream video for its monthly meetings and has archived the past meetings.
State Education Department Guidance on Graduation and Course Requirement Changes due to COVID-19 and Ongoing Statewide School Closure (April 7, 2020)
US Department of Education: Questions and Answers on Providing Services to Children with Disabilities During the Coronavirus Disease 2019 Outbreak March 2020: https://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/qa-covid-19-03-12-2020.pdf
The Elephant in Every Room I Enter. Created by Gardiner Comfort and Kel Haney. A solo piece about Gardiner Comfort’s experience as an actor living with Tourette Syndrome.
Mr. Comfort will be returning to the Osler Society at the Zucker School of Medicine at Hofstra / Northwell to present a free, one-hour presentation on Zoom.
May 26th, 2020
5:00 – 6:00 p.m.
And learn more here: https://www.nytw.org/show/elephant-in-every-room-i-enter/
Virtual National Parks
Story Time from Space
Astronauts read stories, from space!