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

 

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

Remembering Dr. Oliver Sacks

Dr. Oliver Sacks worked much of his life to unravel mysteries of Tourette Syndrome, Autism, and Parkinson’s. NJCTS was honored to have Dr. Sacks speak at our very first gala in 2001. He was a truly gifted individual who will be missed. Faith Rice, Executive Director of NJ Center for Tourette Syndrome (NJCTS) remembers Dr. Sacks in the following post. Enjoy.

Dr. Oliver Sacks speaking at the NJCTS gala held at the AT&T headquarters in Basking Ridge, NJ, in 2001

Dr. Oliver Sacks speaking at the NJCTS gala held at the AT&T headquarters in Basking Ridge, NJ, in 2001

I had the honor of getting to know neurologist and author Dr. Oliver Sacks when we were in the early stages of creating NJ Center for Tourette Syndrome (NJCTS) and establishing the direction of the organization.

When I began my personal research on Tourette Syndrome (TS) I came across his book, An Anthropologist on Mars, which brought compassion to many neurological disorders, including TS. I then had the privilege to learn about him by speaking with some of his former patients who shared my fascination for him. Over and over they said that he took the time to try to make sense of all the “crazy” things TS made people do. He created enormous awareness and sensitivity around a TS diagnosis and shared with the general public his curiosity at unraveling the mysteries of Tourette Syndrome.

Dr. Sacks, based on his clinical work and research, focused on people living with TS and was, perhaps, the only author to write about those with TS in such a compassionate and understanding way, humanizing this often misunderstood and misdiagnosed disorder.

In 2001, we were preparing for a gala to be held at the AT&T headquarters in Basking Ridge, NJ, and we invited Dr. Sacks to be our guest speaker because of his wonderful work in TS. I worked with his team for more the 6 months, reviewing scripts, and preparing him for the evening. To our delight, he agreed.

Dr. Sacks with NJCTS board member Tim Omaggio

Dr. Sacks with NJCTS board member Tim Omaggio

On the day of the gala, Dr. Sacks arrived early, in the middle of set-up and insisted that I sit and share with him everything about our work and plans for moving our organization forward. Of course, I knew I had to. In the midst of finalizing last minute details for the event I stopped everything I was doing to spend one-on-one time with him. We spent the next hour getting to know each other, talking about TS, and about our growing efforts to spread awareness of the disorder. I shared my vision of that, through partnerships and collaborations, NJCTS sought to provide a continuum of services and support for families, provide training for medical and educational professionals, and advocate for collaborative research for better treatments and a cure for TS. I had no idea at the time that this would be one of the most special hours of my life. He was warm, brilliant, and compassionate. I distinctly recall him saying to me, “You are doing God’s work.” His words have stuck with me ever since. He was the perfect guest speaker that night.

Tim Howard speaking at the NJCTS gala at the AT&T headquarters in 2001

Tim Howard speaking at the NJCTS gala at the AT&T headquarters in 2001

Also at our gala was rising-star Tim Howard, now US Men’s National goalkeeper, who spoke about his struggles with TS and growing up on New Jersey soccer fields. Dr. Sacks quickly became intrigued by Tim and his amazing athletic prowess because of and in spite of his TS. Sacks was curious about the ability of an individual with TS to take advantage of their TS and channel its hyperfocus in a creative or athletic way. His work helped shape the public’s understanding that TS is more than just strange tics.

Dr. Oliver Sacks with NJCTS Executive Director Faith Rice and NJCTS board member Tim Omaggio

Dr. Oliver Sacks with NJCTS Executive Director Faith Rice and NJCTS board member Tim Omaggio

Oliver Sacks shared my vision for the TS community. He was a truly gifted and brilliant individual who taught us so much about each other. He will be missed.

Two 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 Phase2a, Open-Label Trial Evaluating the Efficacy, Safety, and Pharmacokinetics of Orally Administered SNC-102 in Adult Subjects with Tourette Syndrome

Ages: 18-75

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/NCT02217007?term=synchroneuron+tourette%27s&rank=1

The Best Things to Eat if You Have Tourette

We’ve had several entries on the Tourette Blog about what you shouldn’t eat. It’s time for a little positivity!

Today, we take a look at what you should eat if you have Tourette Syndrome. Like all the questions we tackle here on the Tourette Blog, there is no simple answer for those asking about the best things to eat if you have TS.

There is a lot of information out there about what people should or shouldn’t eat in order to be healthy, lose weight, build muscle, etc. etc. It is easy to become confused and to end up with more questions than answers.

The reality is that there no one size fits all diet. You should consult a doctor and possibly a dietician for customized advice to make sure your diet is healthy and that you are taking into consideration any medical issues, allergies or food sensitivities.

On the whole, it is important to eat food that will strengthen your immune system, help keep your blood sugar levels steady and give your body the nutrients it needs. Such foods can include:

  1. Flaxseed, olive or canola oil (contains essential fatty acids)
  2. Blueberries, cranberries or other antioxidant-rich foods (repairs damage, strengthens immune system)
  3. Carbohydrates like legumes, peas, or whole grain cereal (for energy)
  4. Protein including fish, poultry, or natural soy products (helps keep your blood sugar under control and builds your cells)
  5. Water (makes us 60% of your body and almost 70% of your brain)
  6. Non-processed food (higher in nutrients)

It may surprise you to learn that people with TS do not always eat well. On the contrary, one 2015 study found that the individuals with TS that they examined had “unbalanced” nutritional intake. This included not having enough protein intake compared to nutrient intake and inappropriate ratio of fat to carbohydrates.

What is your diet like? Do you eat the foods listed above? Do you eat anything specifically to help with your Tourette?

We want to hear from you!

 

Sources:

Sheila Rogers, Natural Treatments for Tics & Tourette’s:http://www.amazon.ca/Natural-Treatments-Tics-Tourettes-Patient/dp/1556437471

Liang et al. “Evaluation of dietary behavior and nutrient intake in patients with Tourette Syndrome” The Journal of the Federation of American Societies for Experimental Biology.http://www.fasebj.org/content/29/1_Supplement/911.16.short

Research opportunity at CHOP

RESEARCH OPPORTUNITY: Help advance knowledge on Tic Disorders and earn $50! Seeking children and adolescents ages 8-17 with CTD or TS to participate in a 2-3 hour research study conducted at CHOP. The study investigates brain mechanisms associated with controlling repetitive behaviors. Please visit http://www.patsainc.org/Tourettes-Info/Current-Research-Opportunities.aspx or contact Kathryn Roberts, M.A. at robertsk2@email.chop.edu for study details or to sign up.

CoRH

CARE for Tourette Syndrome Act reintroduced by New Jersey Senator & Congressman

Congressman Albio Sires and Senator Bob Menendez have reintroduced the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act to expand and further coordinate efforts towards research for Tourette syndrome.  This bill would promote activities at the National Institutes of Health (NIH) aimed at combating and diagnosing Tourette syndrome.

“Tourette syndrome continues to be a misunderstood disorder that is too often stigmatized, I am eager to reintroduce legislation that will work towards helping the lives of those affected by this syndrome,” stated Congressman Sires. “While symptoms can be suppressed overtime, too many individuals, particularly children, face the everyday challenge of trying to manage tics whether at school or in various social settings.  Expanded and collaborative research can teach us more about the cause and treatment of the disorder to help improve the lives of those individuals impacted by Tourette syndrome.”

“Today, we reintroduce the CARE for Tourette Syndrome Act to reinforce our commitment of increasing awareness and attention to combat this condition,” said Senator Menendez. “This legislation aims to expand our research efforts into this commonly misdiagnosed and misunderstood disease, allowing us to provide families and individuals with TS the security and peace of mind they desperately need – knowing we will continue to build on the progress already made at research centers like the one at Rutgers University, to better the lives of those it affects.  I look forward to working together with both the House and the Senate to find solutions that ensure this important bill is able to become law.”

Tourette syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics.  The NIH estimates that 200,000 Americans suffer from the most severe form of Tourette syndrome, while as many as one in 100 exhibit milder symptoms such as chronic motor or vocal tics.  Although symptoms continue for many through adulthood, the disorder generally peaks in severity during childhood.

Specifically, this bill would direct the Secretary of Health and Human Services (HHS) to develop a new system to collect data on Tourette syndrome, including the availability of medical and social services for individuals with Tourette syndrome and their families.  It would also instruct the Secretary of HHS to award grants to public or nonprofit private entities to establish new Collaborative Research Centers focused on Tourette syndrome research.  Such Centers would be established on a regional basis, and would conduct research, including investigations into the cause, diagnosis, early detection, prevention, control and treatment of Tourette syndrome.

Faith Rice, the executive director of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), said the bill would bring added awareness to the disorder and could provide vital services to those coping with Tourette syndrome nationwide.

“It’s a population that continues to suffer from misdiagnosis, misunderstanding and the tremendous stigma that’s associated with Tourette syndrome,” Rice told The Jersey Journal. “This puts a serious light on the disease, the disorder, and an awareness that we certainly could not create on own.”

Established in 2004, the Somerville, N.J.-based organization is the nation’s first center of excellence for Tourette syndrome and a loose model for what Sires and Menendez hope to replicate across the country. United States Men’s National Team goalie Tim Howard – a North Brunswick native who suffers from Tourette syndrome – sits on the organization’s Board of Directors.

Understanding depression in children

As a child or teen, did it bother you when people would comment “these are the best years of your life”?

For many children, this blanket statement is a stark contradiction from the reality they know. A bulk of people experience a childhood or adolescence that is not always filled with rosy or positive experiences.

Once considered impossible, today’s experts are aware that even young children sometimes suffer from depression. As a parent, it’s hard to acknowledge that your child might be suffering from this ailment. If you feel that a child is suffering from depression it’s important to understand the facts, signs, symptoms, and pointers to help a child cope.

Childhood Depression

The American Academy of Child and Adolescent Psychiatry now estimates that typically one in 20 children or teens are depressed. This is shocking when you consider that within every classroom is a high probability that at least one child in attendance is suffering from depression.

Depression is a real medical condition and should be treated accordingly. Many parents feel there is a stigma attached to a child if it is suspected that she suffers from depression. Unfortunately, this is an illness that they can’t just “snap out of” and requires attention.

“Depression is no more a result of ‘bad parenting’ than is diabetes or cancer,” says Dr. David Fassler, co-author of “Help Me, I’m Sad”: Recognizing, Treating and Preventing Childhood and Adolescent Depression. “All are real illnesses that require careful evaluation. The good news is that we can help most children and adolescents.”

Continue reading