Neeta Elementary School Principal named 2015 NJCTS Educator of the Year

Nominated by Jen Heicklen and her daughters, Anna and Ava, Carole Ramage was chosen as this year’s winner by the NJ Center for Tourette Syndrome

Neeta Elementary School Principal Carol Ramage accepting the NJCTS Educator of the Year Award from NJCTS Executive Director Faith W. Rice at NJ Walks for TS in Medford Lakes on September 20.

Neeta Elementary School Principal Carole Ramage accepting the NJCTS Educator of the Year Award from NJCTS Executive Director Faith W. Rice at NJ Walks for TS in Medford Lakes on September 20.

Principal Carole Ramage of Neeta Elementary School in Medford Lakes, NJ continues to be a source of support and compassion in Anna and Ava Heicklen’s lives. She has taken the girls under her wing, going above and beyond her responsibilities as a school administrator.

Ramage comforted Anna and her mother, Jen, early in Anna’s 3rd grade school year when she noticed Anna’s hesitation to enter school. Often, Ramage would approach the car and ask Anna to be her helper, easing Anna into her morning routine.

In fifth grade, Anna’s tics were becoming more noticeable to her peers and Ramage encouraged her to make a presentation to her class about Tourette Syndrome (TS). The presentation changed Anna’s life and she now feels comfortable knowing that everyone knows about TS and supports her.

Anna Heicklen now enters the school with the confidence Ramage helped her find within herself. For that Principal Ramage was nominated by Jen Heicklen to be the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) Educator of the Year. The Heicklen family recognized Ramage on the last day of school and the award was presented to her at the NJ Walks for TS at Medford Lakes on September 20. NJCTS annually recognizes teachers, guidance counselors, administrators, and other education professionals who are making a difference in the lives of a student with TS—an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 school-age children.

“If it weren’t for Mrs. Ramage advocating for my child, she would not have presented to her class,” said Heicklen. “The presentation changed my daughter’s life. From that day on she has not been upset one day about attending school. She feels comfortable. Without Mrs. Ramageʼs influence on our family, this would not have happened.”

Anna’s younger sister Ava, who also has TS, was encouraged by Ramage to make a presentation to her third grade class. Ramage continues to update the Heicklen family with how well Anna and Ava are doing in school.

“She would send me texts during the day letting me know that Ava was doing well,” said Heicklen. “This information allowed me to relax and worry less about my kids. It is time for this unsung hero to be acknowledged and rewarded for her dedication to the kids for her selfless acts.”

NJCTS has granted Educator of the Year awards since 2001. More information about the Educator of the Year award is available by calling 908-575-7350 or visiting www.njcts.org.

Congressman Donald Norcross Joins NJ Walks for TS Honorary Committee

Congressman Donald Norcross (D-1) joins the NJ Walks for TS at Medford Lakes Honorary Committee

Congressman Donald Norcross (D-1) joins the NJ Walks for TS at Medford Lakes Honorary Committee

The first NJ Walks for TS advocacy event in South Jersey has a champion in Congressman Donald Norcross (D-1) who will serve on the event’s Honorary Committee.

NJ Walks for TS at Medford Lakes will take place on Sunday, Sept. 20 at Beach 1/Upper Aetna Lake. It’s an offshoot of the highly successful NJ Walks for TS at Mendham which began in 2010 to support the work of the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS). NJ Walks for TS was started by kids, for kids; in fact, the impetus behind bringing this event to South Jersey is the Heicklen family who want to raise awareness and support for the thousands of kids and families living with TS.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary vocal or muscle movements known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, anxiety, depression or learning disorders. As many as 1 in 100 people show signs of TS, however, the disorder often remains misunderstood and misdiagnosed. Proceeds from NJ Walks for TS will benefit the NJCTS Education Outreach Programs which deliver outreach to healthcare professionals, educators, and students across the state.

“Congressman Norcross’s support means so much to the families and professionals we serve, said NJCTS Executive Director Faith W. Rice. “We’re grateful for his commitment to raising awareness of this important advocacy event.”

“Tourette Syndrome is a serious disorder affecting people of all ages across South Jersey,” said Rep. Donald Norcross. “Tourette Syndrome causes quality of life issues for those individuals and their caretakers. That’s why I’m working to improve research efforts and help us better understand, control, and treat the disorder.”

NJ Walks for TS at Medford Lakes will feature activities for families, music and an atmosphere of acceptance for all ages. Registration is $25. Donations will be accepted online for individuals and teams-regardless of event attendance. Sponsorships are still available for corporations, small businesses and individuals by calling 908-575-7350. For more information about NJ Walks for TS, visit www.njcts.org/walk. For more information about Tourette Syndrome and the work of NJCTS, visit www.njcts.org.

NJ Walks for TS LOGO big

NJ Walks for TS Honorary Committee Welcomes Senator Whelan and Assemblyman Mazzeo

Senator Jim Whelan (D-2) and Assemblyman Vincent Mazzeo (D-2) have joined the Honorary Committee of the first 5K walk and family fun run in the region to benefit local children and families with Tourette Syndrome.

NJ Walks for TS at Medford Lakes will take place on Sunday, Sept. 20 at Beach 1/Upper Aetna Lake. It’s an offshoot of the highly successful NJ Walks for TS at Mendham which began in 2010 to support the work of the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS). NJ Walks for TS was started by kids, for kids; in fact, the impetus behind bringing this event to South Jersey is the Heicklen family who aim to raise awareness and support for the thousands of kids and families living with TS.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary vocal or muscle movements known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, anxiety, depression or learning disorders. As many as 1 in 100 people show signs of TS, however, the disorder often remains misunderstood and misdiagnosed. Proceeds from NJ Walks will benefit the Education Outreach Programs of NJCTS which deliver outreach to healthcare professionals, educators and students across the state.

“We’re grateful to Senator Whelan and Assemblyman Mazzeo for their continued participation and support of  NJ Walks for TS as we bring this special event to more families across the state,” said NJCTS Executive Director Faith W. Rice.

NJ Walks for TS at Medford Lakes will feature activities for families, music and an atmosphere of acceptance for all ages. Registration is $25. Donations will be accepted online for individuals and teams-regardless of event attendance. Sponsorships are still available for corporations, small businesses and individuals by calling 908-575-7350.

NJ Walks for TS LOGO big

For more information about NJ Walks for TS, visit www.njcts.org/walk. For more information about Tourette Syndrome and the work of NJCTS, visit www.njcts.org.

Moms on a Mission Bring NJ Walks for TS to South Jersey

Jen Heicklen and Maureen Faber have a lot in common. They both own local businesses—Jen and her husband Steve own Jersey Pools and Spas and Maureen owns Medford Fitness. They both support their community. They both have children. But what brings them together these days is the fact that they both have daughters with Tourette Syndrome.

Together, they’re the force bringing NJ Walks for TS to Medford Lakes on September 20th.

“We consider ourselves very fortunate as this disorder is not life threatening, however it is heartbreaking,” said Jen of her two daughters Ana and Ava.

Like many kids with TS, Maureen’s daughter Hayley has dealt with feeling socially unaccepted.

“As a parent, I’m compassionate for every ‘Hayley’ in the world, and for every parent who also helplessly watches their children battle with the consequences of this disorder,” said Maureen.

Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, mental health issues and learning disabilities. As many as 1 in 100 children exhibit symptoms of TS, with onset of symptoms beginning around age 7 which concurrently challenge a child’s physical and emotional well-being.

“There are almost as many people who suffer from TS as there are people who suffer from diseases more familiar to the public such as autism,” said Maureen. “But, sadly, there are not nearly the amount of advocates who have committed to help the children who are plagued by Tourette.”

NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) was founded with this need in mind by Faith W. Rice, the mother of an adult son with TS. Over the past decade, NJCTS has established programs to provide support for families the TS community while training doctors and educators to innovate identification and treatment strategies. In 2010, NJ Walks for TS began as an advocacy event started for kids, by kids to benefit kids with TS. Since then, NJCTS has brought NJ Walks to North and Central Jersey. Later this month, the 5K walk and family fun run will make its official South Jersey debut at Beach 1 in Medford Lakes.

“My involvement in NJ Walks for TS complements my personal mission to raise awareness, in an effort to gain the support of the public—which will lead to greater scientific understanding of TS, foster social acceptance, and advance treatment options,” said Maureen.

“It has been a long road in the Heicklen House, just as in any home where there are special need issues,” said Jen. “The difficulty is not in the tics themselves, but in seeing the girls lack of confidence when ridiculed or excluded. But, this has changed over the last year due to the girls dedication in educating their peers and community about TS.”

Jen’s daughters Ana and Ava have become trained NJCTS Youth Advocates and have learned to fight the stigma attached to TS by sharing the facts about the disorder on behalf of themselves and others with TS.  NJCTS Youth Advocates deliver school presentations to their peers and participate in hospital grand rounds to educate doctors about the difficulties of life with TS.

All proceeds from NJ Walks for TS will benefit these programs which are part of NJCTS Education Outreach.

“We cannot tell you how this advocacy work the girls are doing has built their confidence, they are empowered. You can help them empower others by joining us for this great day,” said Jen. “You can help by signing up for the walk, being a sponsor, or volunteering to help on September 20th.”

Registration and sponsorship information is available at www.njcts.org/walk. NJ Walks for TS at Medford Lakes will take place Sunday, Sept. 20 at Beach 1 (Vaughan Hall) on Tabernacle Road rain or shine. Check-in begins at 8 a.m. All ages and abilities are welcome.

“As a family who has supported their community endlessly, we respectfully request that you all support us with this walk,” said Jen.

Maureen concluded, “one in every hundred children living in New Jersey suffers from TS, battling every day in hopes of a cure—participation on Sept. 20th will keep tens of thousands of children encouraged as we collectively raise awareness.”

South Jersey sisters, mom raise awareness for Tourette Syndrome

Jen Heicklen of Medford Lakes with her daughters Anna, 11, left, and Ava, 10 who have Tourette Syndrome. The trio helped get a New Jersey Walks for Tourette Syndrome event in South Jersey for the first time. Event will be Sept. 20 in Medford Lakes and they will all participate. 09.08.15 (Photo: Chris LaChall/Staff Photographer

Jen Heicklen of Medford Lakes with her daughters Anna, 11, left, and Ava, 10 who have Tourette Syndrome. The trio helped get a New Jersey Walks for Tourette Syndrome event in South Jersey for the first time. Event will be Sept. 20 in Medford Lakes and they will all participate. 09.08.15
(Photo: Chris LaChall/Staff Photographer)

By: , @cp_CWhittaker

Courier-Post

Jen Heicklen has seen a huge difference in her daughters’ confidence levels since they started talking about the disorder they share.

Getting up and talking in front of classrooms across the state about Tourette syndrome has not only helped the two girls’ self-esteem, but has also educated hundreds of children about the disorder.

Tourettes — an inherited neurological disorder characterized by uncontrollable movements or sounds known as tics — has impacted both Anna, 11, and Ava, 10 and sharing their story has helped others and themselves.

Along with their mother, they’ve helped bring a New Jersey Walks for Tourette Syndrome 5K walk and family fun run to South Jersey for the first time. The event is set for 10 a.m. Sept. 20 at Upper Aetna Lake on Tabernacle Road.

She and the girls came up with the idea after hearing about the walks in other parts of the state.

“We said you know what, let’s do one down here,” she said. “My kids have worked hard to get people involved. My whole community is getting involved. For me personally, it’s not about raising money necessarily it’s about building my kids’ confidence. The money they do raise will help their confidence. There’s nothing better as a mom than to see your kids go from no confidence to confidence.”

Anna and Ava are now youth advocates for the New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) and have received extensive training on how to spread awareness. They’re certified to present programs to schools, organizations and clubs throughout the state. At a recent presentation, a 12-year-old boy was inspired to tell his classmates that he also had Tourettes.

To read more, visit http://www.courierpostonline.com/story/news/2015/09/09/sj-sisters-mom-raise-awareness-tourette-syndrome/71879740/

Ask Dr. Ticcy: My Child Won’t Go to School

Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dr Ticcy:

Help! My kid won’t go to school. I tell them to go and they say no. They say they feel sick, they cry and they tell me that their stomach hurts. They get really anxious. I don’t what to do!

From,

Out-of-options

 

Dear Out-of-Options,

It’s common for kids to feel some anxiety about going back to school. Being firm with your kids and telling them, “you must go back to school” is an option. For many, this may be enough. However, like yourself, some parents try this and things don’t get better. If separation anxiety or back-to-school anxiety becomes overwhelming or disruptive, it is time to think about doing something about it.

Where to begin? There are several options and possible strategies you might consider:

Professional support Speak to a professional counsellor, doctor, or psychologist.  They can make further recommendations, which may include behavioural therapy, prescription medication, gradual re-entry to school, and rewards for school attendance.

Transitional objects Teachers can encourage students to bring a “transitional object” from home (ex. favourite stuffed animal) and to take a special object home with them, such a drawing or a book. This can help your son or daughter feel more comfortable.

Touching base during the day You might try pre-arranging a particular time when your son or daughter gets to call, text, or email you. This could be a reward for completing work or simply a plan to help them get through the day.

Improve the drop-off Morning drop-off can be particularly tough. If possible, you might consider having someone else drop off your child to make it easier for your child to separate and enter the school.

Some separation is okay You may be tempted to spend every waking second with your child but this can make it harder to seperate. Consider trying to systematically increase the amount of time your son or daughter is separated from you while in the home or outside of school.

Additional Support Additional adult support may be needed during interactions with peers, lunch hour, and during transitions. During new or novel situations, teachers can help students by providing them with specific instructions or special tasks. For example, a teacher could tell the student, “When we get to on our field trip tomorrow, you can help by checking off each student’s name as they get on and off the bus.”

Take the scariness out presentations Talking in front of the class can be a source of panic and anxiety. It may be a good idea to allow anxious students to watch others do their presentations before asking them to get up in front of the class. Talk to your child’s teacher if you think this may help. Practicing presentations at home can help too!

Make a plan Together with the student, teaching staff (and possibly parents) can plan what the student should do when they feel panicky. This plan may include breathing techniques (ex. diaphragmatic breathing for 10 breaths), thinking about how a good friend might handle the same situation, exiting the classroom for a brief walk, standing out in the hall for a few moments, and/or going to the office or special education resource room.

I hope these suggestions help you and your child.

Best wishes,

Dr. Ticcy 

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.