Fifth annual advocacy walk in Mendham for People with Tourette Syndrome

Thrifty runners, walkers and team captains are encouraged to take advantage of the final days of the early bird registration discount for the fifth annual NJ Walks for Tourette Syndrome at Mendham event.

Until Monday, Oct. 13, registration is reduced to $22.50. The price will then increase to $25 for online and on-site registration.

 "This event, which started out by kids for kids, has grown to a powerful movement," Faith Rice, director of the N.J. Center for Tourette Syndrome (NJCTS), said in a statement. "The more people we having stepping up and stepping out for kids living with Tourette Syndrome the more likely we are to break the stigma attached to this very misunderstood disorder."

Each year the event draws hundreds of walkers and runners, families and pets to Mendham Borough Park. Early registration helps the NJCTS plan for the day and ensures a commemorative T-shirt for each participant.

Funds raised will benefit NJCTS's education outreach program which includes training programs for teachers and nurses at schools around the state, as well as peer training and anti-bullying sessions on behalf of New Jersey kids with Tourette Syndrome.

Tourette syndrome is a neurological disorder characterized by involuntary sounds or movements known as tics. A person with Tourette syndrome is extremely likely to struggle with accompanying mental health or learning disorders as well. It is estimated that as many as 1 in 100 people show symptoms of Tourette syndrome, or over 20,000 children in New Jersey, the statement said.

 "There has never been a better time to gather and celebrate the joy and accomplishments of those in the TS community," said Rice. "Even if you've never met someone with TS we invite you to become part of a day of empowerment and acceptance."

For those unable to attend the event, sponsoring an individual or team is a way to show support for those living with TS. Corporate/business sponsors also are needed to help present the event.

For information visit www.njcts.org or call (908) 575-7350.

Source:http://newjerseyhills.com/observer-tribune/news/fifth-annual-advocacy-walk-in-mendham-for-tourette-victims-is/article_77f1b5fb-c7d2-58d7-b754-20a969a12763.html

World Cup Superstar Tim Howard Inspires Tourette Syndrome Program Making Debut at Rutgers

Photo: Steindy, Wikimedia Commons

When America’s soccer superstar Tim Howard was 10 years old and diagnosed with Tourette Syndrome, he coped as many kids do – by trying to hide the embarrassing tics and twitches that make this disorder so visible.

Now the 35-year-old goalkeeper – who stunned the world with a record 16 saves in the World Cup game between the U.S. and Belgium – wants to show young people how they can succeed in spite of the challenges Tourette Syndrome throws their way. A leadership academy he helped create will debut August 1 at Rutgers, providing 23 teenagers from New Jersey, New York and Pennsylvania with skills to help manage daily challenges.

“We want them to feel empowered,” said Howard, recalling how he felt liberated when he finally decided he wasn’t going to hide his facial tics anymore. “The boosting of my self-esteem was the best medicine that I could ever have – or that I could ever give to someone else.”

Tourette Syndrome is a neurological disorder marked by tics, or uncontrollable body movements, including grimacing, eye blinking and shoulder shrugging. The tics can also be vocal – shrieking, hooting, or repeating words. Although often shown in movies or on television, severe vocal tics that involve cursing or uttering racial slurs are less common.

Howard serves on the board of directors of the New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS), an organization that supports research and provides resources for families coping with the disorder and professionals who provide care.

The center partners with the university in two areas: Rutgers’ Graduate School of Applied and Professional Psychology, which provides consultation and psychological services to children and adults with the disorder, and RUCDR Infinite Biologics, headed by Rutgers geneticist Jay Tischfield, which collects and manages cell and DNA samples from people with Tourette Syndrome. The samples offer researchers the opportunity to mine data that could lead to better treatments and a cure for the disorder.

Howard and the center’s executive director, Faith Rice, have been working together since 2010 to develop what is now officially the “Tim Howard NJCTS Leadership Academy.” Organizers hope to expand the academy and hold its sessions at Rutgers each year.  At the academy's launch on the Busch Campus, Rutgers’ women’s basketball coach Vivian Stringer will lead a workshop on resilience.

“One of the thoughts I gave Faith was that I wished I had this type of group when I was growing up,” said Howard. “We don’t want the kids to feel alone.”

Still, Howard felt he was lucky in many ways. He was a good athlete, he had many friends and his mother was supportive.

“I didn’t get picked on; I was a big kid myself,” he recalled. “The bullying, the ridicule … wasn’t in my face.”

But he noticed when kids would whisper, point, look and laugh.

“That probably hurt even more,” he said.

As Howard rose through the ranks in professional soccer, he again realized how he had to remain out front with his condition. In 2001, he became the starting goalkeeper with the New York/New Jersey MetroStars (now the Red Bulls), and realized he’d be thrust into the spotlight.

“I just thought it was better at that moment to confront it head-on, so I could dispel the myths, answer the questions,” he recalls.

When it comes to raising awareness for Tourette Syndrome, he claims he has the easiest job in the world.

“I get to be myself, play soccer – a tic here and a twitch there – it gets caught on TV and people see it. In the course of 90 minutes, I’m able to raise awareness.”

He draws inspiration from young people who do the hard work of standing up in front of their classes on the first day of school to talk about their condition and their challenges.

“This is who they are and this is what they have,” Howard said.

Rice, the NJCTS executive director, finds Howard’s success inspiring, but she notes there are people with Tourette Syndrome in all walks of life who are successful, including teachers, truck drivers, surgeons.

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Tic Toc Stop Opens Camp Carton for Kids with Tourette Syndrome

The Tic Toc Stop Foundation today announces Camp Carton will begin its inaugural season on July 14 at the Ramapo for Children Camp in Rhinebeck, N.Y. Named for well-known sports radio personality Craig Carton who has Tourette Syndrome (TS), the camp is designed as a haven for children who have TS.

Camp Carton is a seven-day, sleep away camp serving children ages 10 to 13 diagnosed with TS. This year, the camp will host 24 campers from New York, New Jersey, Pennsylvania, and Connecticut, July 14 to 20.

TS is an inherited, misdiagnosed, misunderstood neurological disorder characterized by tics. The summer camp is produced by the Tic Toc Stop Foundation, a nonprofit founded by Craig Carton that raises money to find a cure for TS. For these campers, the camp is entirely paid for by the Tic Toc Stop Foundation.

“I am creating the camp because I know there are a lot of kids with Tourette’s whose families are a little wary of sending them to a camp because they don’t know how the other kids will handle or react to the tics and some of the other things that come along with Tourette’s,” said Carton, a popular part of WFAN Sports Radio’s “Boomer and Carton” morning show in New York. “Why not give those kids an opportunity this year to have a sleepover camp experience where the families don’t have to worry and the kids can enjoy camp for what it’s supposed to be.”

Camp Carton will feature a daily slate of activity choices, including swimming, boating, sports, hiking, a ropes course, arts & crafts, a talent show and more. The main goal, according to Carton, is to provide a fun, safe atmosphere for kids affected by Tourette Syndrome.

Collaborating with Carton to help make Camp Carton a success is the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), which annually hosts its own Family Retreat Weekend at YMCA Camp Bernie in Port Murray, N.J.

For more information about Camp Carton, visit http://www.campcarton.com. To donate to the Tic Toc Stop Foundation, visit http://www.tictocstop.com.

For the original version on PRWeb visit: http://www.prweb.com/releases/2014/07/prweb12010131.htm

New approach for those with Tourette Syndrome being tested in clinical trials

Medical researchers are hopeful that a new investigational drug being tested in clinical trials will prove to be an effective treatment for Tourette Syndrome – an inherited, misdiagnosed, misunderstood neurological disorder that presents in childhood and causes involuntary motor and vocal tics.

The new drug, AZD5213, targets the human histamine H3 receptor.  In the brain, this receptor regulates neurotransmitters associated with Tourette Syndrome – including dopamine and histamine.A mutation that affects histamine synthesis was recently confirmed to be the cause of TS in a father and all eight of his children, a finding supported by research in mice.

If approved for treatment of Tourette, AZD5213 might represent an alternative to antipsychotics, which don’t work well in all patients and can cause serious negative side effects.  Discovered by AstraZeneca, AZD5213 has been shown to have a favorable safety profile, with no serious drug-related side effects reported in Phase 1 and Phase 2 clinical trials completed at the time of this report.

“AZD5213 represents an exciting new approach to the treatment of Tourette Syndrome, and we are currently recruiting teenagers suffering from the disorder to participate in the clinical trial,” says Dr. Roger Kurlan, Director of the Movement Disorders Program at Overlook Medical Center’s Atlantic Neuroscience Institute in Summit, N.J.

Dr. Kurlan, who frequently collaborates with the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) in Somerville, N.J., is a leading expert in the treatment of Tourette and is one of approximately six medical researchers involved in the clinical trial.

AZD5213 already has been studied in other clinical trials, including those for Alzheimer’s disease. With Tourette Syndrome, which is associated with changes in brain chemistry that appear to cause the characteristic symptoms of the disorder, AZD5213 might be able to counteract these changes – with the potential to provide symptomatic relief with less of the negative side effects associated with existing treatments.  More than 200 human subjects have already received single or multiple doses of AZD5213, with no serious drug-related adverse side effects.

The clinical trial is a 6-month, multicenter, randomized, safety, tolerability, pharmacokinetic, and preliminary efficacy study of AZD5213 in adolescents 12 to 17 years of age with Tourette Syndrome. The trial includes an up to 21-day screening period, 6 months of once-daily treatment with placebo or AZD5213, and a 3-week follow-up period.

Because of the crossover design of the trial, all enrolled patients will receive AZD5213 for at least part of the trial. Approximately 24 subjects will be treated in this study.  Safety will be carefully ensured by a battery of safety tests administered at visits throughout the study, and efficacy will be determined by means of questionnaires designed to assess the severity of symptoms associated with Tourette Syndrome.

According to the Centers for Disease Control and Prevention (CDC), 1 in 100 children show signs of Tourette Syndrome. The disorder is three times as likely in boys as in girls, and most patients experience their worst symptoms in their early teen years. There is no cure, and symptoms can persist throughout life – although most patients see improvement as they approach and enter adulthood.

Exaggerated portrayals of Tourette Syndrome have been used for comic relief in films and TV shows, usually featuring characters who shout obscenities involuntarily. In reality, this type of verbal tic – known as coprolalia – is present in only 10 to 15 percent of those with TS.

“In real life, Tourette’s is no laughing matter,” Dr. Kurlan says. “These patients often struggle with self-esteem and socialization issues, which generally arise at a crucial time in their social development. Sadly, many are victims of bullying and the ridicule of their peers.”

Tourette’s is most often present in combination with other neurological disorders, such as attention deficit-hyperactivity disorder (ADHD) or obsessive-compulsive disorder (OCD), and Tourette’s patients are commonly troubled by depression, anxiety and developmental delays.

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