I’m featured in the Trenton Times and on NJ.com!

Check out my story that appeared yesterday in the Trenton Times and on NJ.com! It’s about the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) Children’s Scholarship Program and the NJ Walks for TS at Princeton event this Sunday that is taking place to help support the scholarship program.

I was an NJCTS scholarship winner last year, and this year’s winners should be named in the next couple of months. This is very exciting! One of my favorite parts of the story is when they used this quote from me:

“My parents have taught me to be outspoken about Tourette syndrome and to never be ashamed.”

It’s so true! I hope you like the story. Let me know what you think by leaving a comment here. I’d appreciate it!

NJ Walks for TS at Princeton is right around the corner!

A few months ago, I talked about the NJ Walks for TS at Mercer County Park (near Princeton township) which will take place on Sunday, April 6. Registration will begin at 1 p.m. and the walk will start at 2 p.m. I’m urging you to please come join me there and help support NJCTS.

The money raised will be applied to the Children’s Scholarship Fund, a program that has helped more than 200 high school seniors with TS. Our goal for this fundraising walk is $10,000, and if we want to be able to achieve this, we will need the support of everyone in the central and southern New Jersey TS community.

This walk can make a big difference! It means so much to me, and it is a wonderful and fun way for us to help NJCTS — which is an important organization to all of us! If you can’t attend the walk, please consider making a donation.

Thank you! Hope to see you there!

Fantastic Friends: A great social opportunity for NJ teens with special needs

Hello! My name is Marissa Hacker and I am the National Child Awareness Month (NCAM) New Jersey Youth Ambassador and also the founder of a nonprofit organization called Fantastic Friends.

This year for my Ambassadorship project, I am on a mission to travel to different inclusive social programs in New Jersey and help spread awareness about the need for these programs. I started a campaign called NJF.R.I.E.N.D. (New Jersey Facilitating Resource Improvement Empowering New Development), to help connect people with disabilities and special needs to these inclusive social programs.

Fantastic Friends is an inclusive social group for tweens, teens, and young adults with special needs. Every month Fantastic Friends holds a themed social function in a South Jersey location.

I have some members in my organization that have Tourette Syndrome, and I would like to connect with more people who have Tourette Syndrome. I would also like to help spread more awareness for Tourette Syndrome, while also blogging about Fantastic Friends events that are always open to new friends and volunteer friends.

Being a sibling of a brother who has Autism, I know the struggles that come along with having a disability. I see that the biggest problem that people with disabilities face is social isolation. I am looking forward to your feedback! Thank you very much!

Rock group “The Lappes” to jam at NJ Walks for TS at Mendham on November 23

The Lappes (pronounced laps) will partner with with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for the second time this year by playing at the 4th annual NJ Walks for TS at Mendham, on Saturday, November 23, at Borough Park.

The Lappes, who played in April at NJ Walks for TS at Ramapo College, are looking forward to the upcoming event and will begin playing when registration and check-in opens at 9 a.m. The walk itself will commence at 10 a.m.

The Lappes are a four-piece, smooth rock fusion band that have taken their inspiration from classic rock and reggae icons such as The Allman Brothers Band and Toots and the Maytals, and fused it with contemporary sounds comparable to John Mayer and Phish. Band members include guitarist and vocalist Tom Wilkinson; guitarist, pianist and vocalist Will Miehe; bassist John Fraze and percussionist Shane Naidoo. 

Tourette Syndrome (TS) is an inherited, misdiagnosed, misunderstood neurological disorder characterized by involuntary movements and sounds called tics that affects 1 in 100 children and adults. Miehe – who was diagnosed with TS, Obsessive Compulsive Disorder (OCD) and Attention Deficit Disorder (ADD) in the third grade – is excited to once again support New Jersey’s vast TS community.

“We had a great time playing at the last walk,” Miehe said. “TS is something that has affected me personally. Music has helped me cope with it, and I would like to share my outlet with others. We hope for a good turnout and anticipate an amazing time.”

The Lappes have performed in numerous iconic New Jersey locations, including The Court Tavern in New Brunswick and The Revel Casino in Atlantic City. Currently, The Lappes are cutting a demo EP that will be ready for release by the end of November 2013. For more information or to look up show dates, please visit The Lappes’ Facebook page You can also follow them on Twitter or Sound Cloud. 

NJ Walks for TS at Mendham will be a day of advocacy, awareness, acceptance and action geared toward raising funds to support educating students and teachers about TS across the Garden State through the School In-Service Program. All money raised will help fund the School In-Service Program, which costs NJCTS $71,000 per year.

More information about NJ Walks for TS is available by calling 908-575-7350 or by visiting the official registration and fundraising pages.

Applying for Social Security Disability with Tourette Syndrome

There are many symptoms that an individual with Tourette’s syndrome may suffer from that can prevent that individual from maintaining full-time work activity. The inability to work can lead to significant financial distress. Fortunately, in some cases, Social Security Disability benefits can help alleviate some of the financial stress caused by the condition.

Qualifying for Disability Benefits with Tourette’s syndrome

In order to be eligible to receive disability benefits from the Social Security Administration, you must meet the SSA’s medical qualifying criteria. When you apply for Social Security Disability benefits, the SSA will compare your condition to a listing of conditions known as the Blue Book. This publication contains all of the conditions that could potentially qualify an individual for Social Security disability benefits, along with the criteria that must be met for each condition.

Unfortunately there is no specific listing for adults with Tourette’s syndrome in the SSA’s Blue Book. Individuals who suffer from Tourette’s syndrome may, however, be able to qualify under a Residual Functional Capacity (RFC) Evaluation.

The SSA will evaluate both your physical and mental residual functional capacity. The physical RFC will evaluate your ability to sit, stand, walk, lift, climb, etc. The mental RFC will evaluate your ability to mental and emotional work-related activities such as interacting with co-workers and getting along, ability to follow direction, etc. People with Tourette’s are more likely to qualify through the mental RFC since the symptoms of Tourette’s are frequently disruptive and can have an adverse impact on an individual’s ability to interact and be productive in the work place.

Children, on the other hand can qualify for by meeting the listing for tic disorders in the blue book. The child must experience: Continue reading