Tourette Research opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013Atlantic Neuroscience Institute at Overlook Medical Center routinely offers studies and clinical trials in a range of neurological and movement disorders, including Tourette syndrome. To learn more, please contact Caroline Sabatino, Research Associate, at 908-522-5901. 

 

Pediatric Tourette Trials

Ecopipam Treatment in Tourette syndrome

  • The purpose of this research study is to evaluate the effects an “investigational” drug (ecopipam) has on tics in subjects aged 7-17 years with Tourette syndrome (TS). Investigator: Roger Kurlan, MD

 

Multimodal Dietary Treatment in Tourette syndrome

  • This study is open to patients ages 12 -18 with Tourette syndrome (TS) and aims to evaluate whether a multimodal dietary approach will improve the symptoms of TS. Investigator: Roger Kurlan, MD

 

A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome

  • This study is open to children and adolescents ages 6-17 who have Tourette syndrome (TS), and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

 

Adult Tourette Trials

A Randomized, Double-blind, Placebo-controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

  • This study is open to adults ages 18-64 who have Tourette syndrome (TS) and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

 

The GreaTS have arrived!

TheGreaTS_NJCTS_BannerChange the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.

New Pediatrics Tourette Syndrome Research Opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013

Study 4: Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome

Ages: 6-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: http://www.prnewswire.com/news-releases/neurocrine-announces-initiation-of-phase-ii-clinical-study-of-vmat2-inhibitor-valbenazine-in-children-and-adolescents-with-tourette-syndrome-300213365.html

Overlook Medical Center has additional Tourette Syndrome studies available

Study 1: Multimodal Dietary Treatment in Tourette’s Syndrome

Ages: 12-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

Patients with TS age 12-17 are eligible to participate. We are testing a group of dietary supplements that act to increase inhibitory chemical signals in the brain, detoxify environmental toxins, strengthen the body’s metabolism, and support brain nerve cell membranes. Subjects will also follow a Whole Food diet. The study lasts for 8 weeks and involves 3 visits to our office.

Study 2: A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

Ages: 18-64

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: https://clinicaltrials.gov/ct2/show/NCT02581865

Study 3: Ecopipam Treatment of Tourette’s Syndrome in Subjects 7-17 Years

Ages: 7-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: https://clinicaltrials.gov/ct2/show/NCT02102698?term=Ecopipam+treatment+of+Tourette%E2%80%99s+Syndrome+in+Subjects+7-17+Years&rank=1

 

Three research opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013

Study 1: Multimodal Dietary Treatment in Tourette’s Syndrome

Ages: 12-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

Patients with TS age 12-17 are eligible to participate. We are testing a group of dietary supplements that act to increase inhibitory chemical signals in the brain, detoxify environmental toxins, strengthen the body’s metabolism, and support brain nerve cell membranes. Subjects will also follow a Whole Food diet. The study lasts for 8 weeks and involves 3 visits to our office.

Study 2: A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

Ages: 18-64

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT02581865

Study 3: Ecopipam Treatment of Tourette’s Syndrome in Subjects 7-17 Years

Ages: 7-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT02102698?term=Ecopipam+treatment+of+Tourette%E2%80%99s+Syndrome+in+Subjects+7-17+Years&rank=1

NJ Walks for TS Honorary Committee Welcomes Congressman Leonard Lance

RepLeonardLance-NJ06Congressman Leonard Lance (R-7) continues his support of NJ Walks for TS at Mendham by joining the event’s Honorary Committee. The 6th annual 5K walk/run at Mendham Borough Park is a day of advocacy, awareness, acceptance, and action.

NJ Walks for TS at Mendham benefits the Education Outreach Program of the NJ Center for Tourette Syndrome which educates students and teachers at schools in every corner of New Jersey about TS, anti-bullying and self-advocacy as well as delivering on-site hospital training for doctors. Each member of the Honorary Committee has a history of support for the 1 in 100 children living with Tourette Syndrome (TS)—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Lance is a longtime champion of NJCTS, beginning with his days in the New Jersey State Senate. He is a co-sponsor of federal legislation for Tourette Syndrome and hosts roundtable discussions with families living with the disorder.

“NJCTS is grateful for Congressman Lance’s continued support of NJ Walks for TS at Mendham,” said NJCTS Executive Director Faith W. Rice. “We hope others will follow his lead and step out in support of the thousands of kids and families living with TS in New Jersey today.”

To join the  Honorary Committee, start a team or register for the walk, call at 908-575-7350 or visit www.njcts.org.

Congressman Frelinghuysen Joins 6th Annual NJ Walks for TS at Mendham Honorary Committee

Congressman Rodney Frelinghuysen (R-11), shown here at the one of the first NJ Walks for TS at Mendham events, has joined the Honorary Committee for this year's event on Nov. 14th.

Congressman Rodney Frelinghuysen (R-11), shown here at the one of the first NJ Walks for TS at Mendham events, has joined the Honorary Committee for this year’s event on Nov. 14th.

Congressman Rodney Frelinghuysen (R-11) continues his support for the NJ Walks movement by joining the Honorary Committee of this year’s event. The 6th annual NJ Walks for TS at Mendham is a 5K walk/run is Saturday, November 14th at Mendham Borough Park designed as a day of advocacy, awareness, acceptance, and action.

NJ Walks for TS at Mendham benefits the NJCTS Education Outreach Program, which educates healthcare professionals, teachers and students at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying and self-advocacy. Each member of the Honorary Committee has a history of support for the 1 in 100 children living with Tourette Syndrome (TS)—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Frelinghuysen is an NJCTS supporter and co-sponsor of federal legislation for Tourette Syndrome.

“NJCTS is grateful for Rep. Frelinghuysen’s continued support,” said NJCTS Executive Director Faith W. Rice. “We hope others follow his example of stepping up on behalf of the TS community.”

To join the  Honorary Committee, start a team or register for the walk, call at 908-575-7350 or visit www.njcts.org.

Congressman Sires Returns to the Honorary Committee for the 6th Annual NJ Walks for TS at Mendham

SiresCongressman Albio Sires (D-8) continues his support for  New Jersey Walks for TS by joining this year’s Honorary Committee. The sixth annual NJ Walks for TS at Mendham Borough Park will take place this Saturday, Nov. 14th. The 5K walk/run is a day of advocacy, awareness, acceptance and action on behalf of the Tourette Syndrome (TS) community.

NJ Walks for TS at Mendham benefits the NJCTS Education Outreach Program, which educates students and teachers at schools in every corner of the state about TS, anti-bullying and self-advocacy, as well as on-site hospital trainings for doctors. Each member of the Honorary Committee has a history of support for the 20,000 New Jersey children living with TS—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Sires has a long history of supporting the TS community in New Jersey. During his days as the New Jersey General Assembly Speaker, he helped obtain funding to create the NJ Center for Tourette Syndrome & Associated Disorders, the nation’s first Center of Excellence for Tourette Syndrome. In Washington, D.C. , Congressman Sires introduced the first federal legislation for Tourette Syndrome.

“Standing up for the TS community is nothing new to Congressman Sires and we’re grateful for his continued support of NJ Walks for TS,” said NJCTS Executive Director Faith W. Rice. “We hope this inspires others to do the same on behalf of children and families living with TS and its associated disorders.”

To join the Honorary Committee, start a team, or register for the walk, call 908-575-7350 or visit www.njcts.org. NJ Walks for TS at Mendham will take place rain or shine, Saturday, Nov. 14th with registration beginning at 8 a.m.

Young Magician Wants to Make Tourette Syndrome Disappear For All

Ben Mars, aka “The Great Marsini” invites the public to stand up and step out on behalf of 20,000 NJ school-age kids with Tourette Syndrome at the 6th annual NJ Walks for TS at Mendham on Nov. 14th.

Drive through Teaneck and you might catch “The Great Marsini” at work. The entrepreneurial 10-year-old makes sure his lemonade or hot cocoa stand (depending on the season) stands above the rest.

“I do magic tricks,” said Ben Mars. “One time a man stopped by on his way to bringing his wife to the hospital just for a glass of lemonade.”

Now the fifth grader is trying to catch the public’s attention for a different cause. He’s a member of the Youth Committee for the sixth annual NJ Walks for TS at Mendham. The event is a 5K walk and family fun run to benefit the Education Outreach Program of the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS).

Tourette Syndrome (TS) is an inherited neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people and is frequently accompanied by ADHD, obsessive-compulsive disorder, learning disabilities, and childhood mental health conditions.

Kids with TS often report feelings of isolation and having a visible disorder makes them targets for bullies.  Classroom learning is challenging for children coping with more than one disorder beyond TS. School can be extremely difficult for the 20,000 New Jersey kids living with TS. Ben was one of them.

“It was hard to find a school for me,” said Ben. “I kept thinking am I a problem?

He is happy at The Park Academy in River Vale and now wants to help others with TS feel understood. He invites the public to attend NJ Walks for TS at Mendham on November 14th to learn about TS and to extend friendship to the TS community.  Registration is available at www.njcts.org.

All proceeds go to outreach programs to teachers, students, doctors, and other healthcare professionals at schools and hospitals across the state.

Ben knows firsthand the empowerment that kids with TS feel once they are understood— especially through in-school presentations.

As for his greatest trick, Ben wants to make TS disappear by working actively for a cure. He’s on the right team as NJCTS is home to the world’s only TS Cell and DNA repository at Rutgers University. For right now, the scientists will handle the research while Ben uses his charm to bring attention to the cause.

On November 14th, Ben will walk with scores of other kids with TS for a day of awareness, acceptance, and advocacy—and he wants you to join them. Registration for NJ Walks for TS begins at 8 a.m. at Mendham Borough Park at the intersection of Mountain and Park Avenues. The day will feature a timed 5K and simultaneous walk, music by the Good Works Band and solo artist Dawson Coyle, food and family fun. For questions about the walk, or to learn more about TS, visit www.njcts.org or call 908-575-7350.

Fifth-grader is Stepping Up Awareness Efforts

Kyle Swords of Pine Brook, NJ with NJCTS Youth Advocate Mike Hayden at a recent presentation at the Hilldale Elementary School.

Kyle Swords of Pine Brook, NJ with NJCTS Youth Advocate Mike Hayden at a recent presentation at the Hilldale Elementary School.

An inspiring 10 year old is quickly becoming his own best advocate.

Kyle Swords of Pine Brook, NJ, is educating his community about an often misunderstood and misdiagnosed disorder which he faces every day. In kindergarten, he started developing tics and 2 years ago he was officially diagnosed with Tourette Syndrome (TS)—a neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people, or an estimated 20,000 school-age children in New Jersey today.

Accepting the diagnosis wasn’t easy at first for Kyle and his family but, over the summer, he attended the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) Team Up with Tim Howard event at Rutgers and it changed his outlook on TS.

“Prior to this event, Kyle had never met other children his age who also have Tourette,” said his mother, Christina Swords. “It was an incredibly powerful experience for him to see so many other people, including [U.S. Men’s National Team Goalkeeper] Tim Howard, who share his condition. For the first time, having TS felt special to Kyle, and even a little bit ‘cool.’”

So, Kyle and his family decided it was time to educate their community about TS.

Hilldale Elementary School student and his family are giving back, supporting other families affected by Tourette Syndrome in their community.

Hilldale Elementary School student and his family are giving back, supporting other families affected by Tourette Syndrome in their community.

“People are often wary of behaviors they don’t understand and as such, we felt that a great way to support Kyle would be to bring awareness to the school about his condition,” said Christina.

The Swords’s reached out to NJCTS Education Outreach Coordinator Gina Maria Jones to schedule a Youth Advocate Presentation at Kyle’s school. With the help of NJCTS Youth Advocate Mike Hayden, Kyle educated more than 150 4th- and 5th-graders at Hilldale Elementary School about TS and about treating others with respect. Kyle bravely addressed the audience and answered some questions about his experience with TS.

Kyle stood proud after the presentation, knowing he had the support and understanding of his teachers and classmates.

“I’m not so worried about my tics anymore,” said Kyle. “Everyone understands that it’s just my TS.” If there is one thing Kyle wants people to know, it’s that “Kids with TS can do anything that kids without TS can do.”

Kyle is also serving on the Youth Committee of NJ Walks for TS at Mendham coming up on Saturday, November 14. Youth Committee members serve as local examples of individuals living successfully with TS—they form teams, fund-raise, and inspire others to join them for a day of awareness and advocacy on behalf of all individuals living with the challenges of TS.

NJ Walks for TS benefits the NJCTS Education Outreach Program, providing in-service trainings and Youth Advocate presentations to schools and hospitals across the state. The program is making it possible for NJCTS to provide the latest information to help professionals identify, diagnose and manage TS and its associated disorders.

“As a family, our goal is to spread awareness of TS into our community,” said Christina. “We want to give back and support other families in the community in any way possible.”

NJ Walks for TS at Mendham is set for Saturday, Nov. 14th at Mendham Borough Park at the intersection of Mountain and Park Avenues. The event is rain or shine and check-in will begin at 8 a.m. For more information about the event, or to learn more about Tourette Syndrome, visit www.njcts.org.