Tourette Association of America Youth Ambassador Program Information & Application

March 5-7, 2017

Thank you for your interest in becoming a part of the Tourette Association of America’s Youth Ambassador Program! The Tourette Association seeks at least one teen & parent/guardian team from each Tourette Association Chapter or Affiliated Support Group (or at least one team per state not served by a Tourette Association Chapter/Affiliated Support Group) to attend the upcoming YA Training. The Training for teens and their parent/adult guardian will take place March 5-7, 2017 at the Crystal City Marriott in Arlington, VA. All applications must be submitted no later than Friday, November 18, 2016. Those teams selected to represent their area as delegates will be notified by Friday, December 16, 2016. Unless otherwise instructed, your completed application should be submitted to your local Chapter/Affiliated Support Group. If there is not one in your state or if have other questions please contact the Tourette Association Chapter Network office at (718) 224-2999 x232 or jen.davis@tourette.org

What is the Tourette Association Youth Ambassador Program? Since its establishment in 2005, the Tourette Association Youth Ambassador Program has been an ever-expanding group of teens with TS (and their siblings, friends and classmates) who speak about Tourette Syndrome and tic disorders to their peers at school, sports leagues, scout troops, camps and after school programs. The purpose of the Program is to spread tolerance of and understanding about TS. The YA Program trains teens to advocate for themselves and for others and to educate their peers with accurate information about this often misunderstood and misdiagnosed disorder. The Program has also aimed to educate lawmakers and the public about TS, and to raise awareness about the impact of federal legislation on the health and well-being of people with TS. The teen and their parent or guardian comprise a YA Team – with the teen giving presentations and the adult helping with scheduling and other arrangements.

Youth Ambassador Requirements The Youth Ambassador must be between 12 and 17 years old.

The Youth Ambassador may or may not have a diagnosis of TS.

The Youth Ambassador must be paired with an adult who will take on the responsibility of helping with the program, presentation, schedule and outreach. These are typically teen/parent teams, however the adult does not need to be a YA’s parent (could be another family member, neighbor, teacher, etc).

Youth Ambassadors must have a clear understanding of Tourette Syndrome. You will be trained, however you must accept responsibility to become proficient in and comfortable with speaking about Tourette Syndrome.

Comfortable with speaking in public.

Good communication skills – both verbal and written.

Must be willing to share your personal experience/story about Tourette Syndrome with Elected Officials.

Must be a member of the Tourette Association of America! If you are not a member, it is very easy to become one by visiting tourette.org.

Major Responsibilities As a Tourette Association Youth Ambassador Team, you play a key role in increasing awareness and understanding of Tourette Syndrome and tic disorders in your community. You should be prepared to present in various settings (for example: schools, after-school clubs, scout meetings, athletic team meetings) as needed. In addition, you will be asked to:

Become an active advocate by learning about TS, the Tourette Association and the issues impacting families.

Prepare short statements (written and spoken) to explain TS and its impact on your (or a diagnosed individual’s) life.

Be interviewed by your local media .

Attend functions such as corporate breakfasts to present short speeches and chat with executives.

Participate in Public Policy Action Alerts and recruit other local activists to support grassroots advocacy efforts.

Organize events for the Tourette Association’s annual Advocacy Day efforts and attend Capitol Hill meetings.

Meet, call, or write to federal and local elected officials.

The role varies throughout the year, and is often linked directly to major annual events. For example, children and families might work with local media during Tourette Syndrome Awareness Month, May 15-June 15 of each year.

Timing Estimated time commitment required from each Youth Ambassador Team:

This is flexible and highly negotiable, however YA Teams are asked at minimum to commit to scheduling one full school year’s worth of presentations to peers. A lot of YA’s present for several years after they train.

We do ask that you and your family consider your availability carefully – the demand for presentations can become substantial.

Please note: It is not unusual for Youth Ambassadors to be asked to present during school hours, as a large portion of a Youth Ambassador’s role is to educate in schools during the school year.

What is the Tourette Association Youth Ambassador Training?

The Tourette Association Youth Ambassador Training is a two-day comprehensive training program aimed at creating exceptional teen leaders and TS advocates. Youth Ambassadors will receive guidance on utilizing the fundamentals of interpersonal communication including overcoming common fears about speaking in public, guidance on how to give a concise presentation on TS and presentation logistics. The Training also includes participation in the Tourette Association’s annual National Advocacy Day. Youth Ambassador Teams will receive training on how to have a successful meeting with their elected officials. This is an excellent opportunity for interested teens to learn public speaking, build friendships with other teens involved in the Program, gain leadership and advocacy skills, and represent the Tourette community as you raise awareness through YA Program activities.

National Advocacy Day – Tuesday, March 7 Youth Ambassador Teams will spend Tuesday, March 7th meeting with their House Representative and two Senators. Appointments will be made in coordination with the Tourette Association’s Public Policy Department. Tourette Association National Advocacy Day advances the legislative priorities of the Association through in- person meetings with Members of Congress and their staffs.

The Tourette Association’s goal is to educate and inform Members of Congress on how TS impacts their constituents and to garner support for the Tourette Association’s Public Policy Issues:

1. Join the Tourette Syndrome Caucus 2. Support the Tourette Association & CDC Public Health Education and Research Program at the CDC

All YA Teams will need to attend mandatory National Webinar Trainings in January and February. You will be notified of those dates in December. During these Webinars, you will be provided with instructions on how to contact your Members of Congress and guidance on how to hold your meetings. The Tourette Association will provide sample form letters and online resources.

March 2017 Training Details:

Dates: March 5-7, 2017

Location: Crystal City Marriott, Arlington, VA

YA Training Schedule: Sunday, March 5: YA teams will arrive & check in at the Crystal City Marriott. That evening, there is registration and an informal (and optional) Meet & Greet. Monday, March 6: For parents, Monday begins at 7:30am for the session “How to do an In-Service: Presenting to Schools”. YA Training starts at 9:00am and runs the full day (with breaks) until 5:00pm. The National Advocacy Day Preparatory Dinner takes place that evening. Thursday, March 7: YA Teams attend National Advocacy Day on Capitol Hill for educational meetings with our elected leaders in Congress.

YA Training Funding: Youth Ambassador Teams selected for attending the YA Training as delegates from their Tourette Association Chapter (or state), will be designated as either a Funded Team or as an Additional Team. Costs associated with Funded & Additional Teams are listed below. There is only one Funded Team per Chapter (or state).

Funded Teams

Costs covered by the Tourette Association:

Hotel accommodations for nights of Sunday, March 5 and Monday, March 6 for the YA team (additional nights at team’s personal expense).

Coach airfare for teen.

Training-sponsored meals for YA team.

Training program materials.

Ground transportation to/from Capitol Hill for National Advocacy Day. At attendee’s own expense (Costs NOT covered by the Tourette Association):

Airfare for parent/adult guardian.

Non-Training-sponsored meals and/or incidental expenses.

Hotel charges for any nights which are part of an extended stay.

Additional Teams

Additional teams which are deemed as qualified by the Tourette Association to serve as delegates may also attend the Training. Costs which must be covered by the Chapter and/or the team members themselves include:

Training Fee of $340 per person (covers training food and beverage, training materials, & National Advocacy Day transportation).

Hotel - $249 a night plus state and local taxes.

Airfare and any additional expenses for non-training related meals and activities.

Questions? Please contact the Chapter Network office at (718) 224-2999 or visit tourette.org

Tourette Association of America Youth Ambassador Program Training Application

March 5-7, 2017

Please complete and sign this application, and don’t forget to have your parent/guardian sign as well. Unless otherwise instructed, your completed application should be submitted to your local Chapter or Affiliated Support Group. All applications must be submitted no later than Friday, November 18, 2016. Applicants residing outside a Chapter/Affiliated Support Group area, can send completed applications to the Tourette Association of America c/o Michelle Gutmann, 42-40 Bell Blvd, Suite 205, Bayside, NY 11361. Candidates selected as delegates will be notified by Friday, December 16, 2016. If you do not have a Chapter/Affiliated Support Group or if you have other questions please contact Jen Davis at the Tourette Association at (718) 224-2999 ext. 232 or email jen.davis@tourette.org. Please clearly print or type all answers. Application must be completed by the Youth Ambassador applicant.

Name: Age: Date of Birth: ________________________ Grade: Address: City: State: Zip Code: Home Phone: E-mail: Do you have a diagnosis of TS? If yes, at what age were you diagnosed? If not, do you know someone with the diagnosis of TS? _____________ What is your relationship to that person? ______________________________________ Parent/Guardian Names: Parent/Guardian Email: Parent/Guardian cell phone: Sibling Names and Ages:

Please enclose a photo which the Tourette Association may use for print materials

Have you been involved in any Tourette Association activities or events? If so, please list the event, what your involvement was, and how much time you have spent on the event/activity:

Have you ever organized an activity for the Tourette Association, school or community organization? If yes, please explain:

What are your favorite hobbies/pastimes/sports?

Do you have any experience with public speaking? If yes, please explain:

If not, would you feel comfortable presenting as a trained Tourette Association Youth Ambassador?

(Youth Applicant Signature) (Date)

(Attach additional pages as necessary)

My Story

Name: Age: Date:

Tell us your story and why you think you would be a responsible Tourette Association Youth Ambassador. You might want to mention the following points:

Tell us about your family.

Do you or someone you know have a diagnosis of TS?

What experiences have you had with other people’s reactions to TS?

Why do you think you would be an effective Youth Ambassador?

Your plans for when you are older.

How you see yourself as a public speaker.

The school age-range you feel most comfortable addressing.

(Attach additional pages as necessary)

For Parent/Guardian I have read the “Youth Ambassador Requirements” and am aware that my child, _________________________, is applying to be trained as a Tourette Association Youth Ambassador at the 2017 YA Training in Arlington, VA. Initial ________ If this application is accepted for attending the Youth Ambassador Training as an Additional Team rather than the Funded Team (please see Youth Ambassador Training Information Sheet), I understand that we will be responsible for all costs of the Training, including Training fees, travel, lodging and incidentals, and other program costs and materials. Initial ________ I give permission for my child's picture and name to be used by the Tourette Association as a Youth Ambassador in any and all publications: Yes No I grant permission to the Tourette Association to use my child’s name, hometown, and likeness with the following restrictions: I have read the application in its entirety and understand the time commitment to prepare and train for the Youth Ambassador Training & Program. Initial ________ We are members of the Tourette Association (required for YA Training attendance): Yes No Parent/Guardian Name: Parent/Guardian Signature: ________________________________________Date: - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - For Chapter Use Only - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Application Received: ________________________ (Date) Application Reviewed by: _________________________________ Applicant Interviewed by: _________________________________ Application Approved: ___________________________________ (Chapter Chair) ___________ (Date)