Welcome State Policy Directors and Advocates,
Congratulations and thank you for making this public service commitment to lead advocacy efforts on Tourette Syndrome in your
state. It is good to know that we can count on you. Awareness and support for the community living with Tourette Syndrome is
growing, and you can help lead the way by helping to change lives through public awareness and federal support. This handbook and
its accompanying materials are designed to be a toolkit-inclusive of everything you will need to know and need to do to be a
successful Volunteer State Policy Director or Advocate. The toolkit will be updated annually with additional information.
There is a greater opportunity for our voices to be heard on Capitol Hill if we organize and train our members as TS advocates. Given
that most of our Chapter Leaders and members are volunteers with families, jobs, and many other time and energy demands, it is
critical that each action we take is conceived and executed for maximum affect. Our Volunteer State Policy Directors/Advocates will
work directly with national TSA’s Public Policy Office to establish a trusting relationship with legislators and their staff. As a result
of repeated contact and information sharing we will gain the opportunity to influence decisions when legislative issues pertinent to TS
arise. The State Policy Director or Advocate would also help the TSA to keep the chapters, and their members informed, motivated
and prepared to take action throughout the legislative session.
This system becomes even stronger when each state develops an extensive roster of active members interested in contacting their
legislators. In this way, chapters can leverage tremendous political strength when particular legislators need to be persuaded. We can
focus our efforts where they will have the greatest impact. The TSA Grassroots network is all about creating a role for everyone to
participate and contribute something to reaching our mission and goals. If you want to have an impact at any level, local, state or
national, you must be willing to reach out to your legislators and find others in your community who share your goals and objectives.
By becoming a TSA State Policy Director you will learn about TS and the issues impacting families living with TS. You will become
a trained and active TS advocate; working directly with TSA’s Public Policy Office and also Chapter/Support Group Chairs to assist
with knowledge and resources necessary to carry out advocacy efforts statewide.
Our State Policy Directors will serve as point persons relating information relaying information between the Public Policy Office and
the State’s Chapter/Support Group and local constituents and will educate members and give clarity and understanding to TS
Advocacy. You will lead local grassroots efforts to help empower members to successfully advocate for Tourette Syndrome and
related policy issues and helped mobilize and coordinate participants for TSA action alerts on public policies provided by TSA. A
major priority for our State Policy Directors is to lead National Advocacy Day meetings in Washington, DC and in-state meetings
with federal elected officials as well as supporting ongoing personal outreach and contacts with elected officials. Perhaps most
importantly we would like you to teach what you’ve learned. Train local members as TS advocates and build chapter grassroots
activists though participation in policy activities and awareness campaigns.
We appreciate your interest and thank you in advance for becoming involved in advocacy for Tourette. If you have any questions
please do not hesitate to contact the Policy Team: Elridge Proctor, Vice President of Public Policy at Elridge.Proctor@tsa-usa.org or
Timothy Convy, Public Policy Associate at Timothy.Convy@tsa-usa.org or by calling the TSA Public Policy Office at 202-4087009/202-408-6431. Thank you again for your commitment to this program and we look forward to working with you.
Sincerely,
Elridge Proctor, MPA
Vice President of Public Policy
Tourette Syndrome Association, Inc.
TABLE OF CONTENTS
About Tourette Syndrome & the Tourette Syndrome Association…….…………………
2
Federal Advocacy……………………………………………………………….…….............
3
Public Policy Issues……………………………………………………………………………
4
Past Congressional Supporters …………………………………………………....................
10
Communicating With Your Legislators...…………………………………………………...
11
Upcoming Advocacy Campaigns…………………………………….………………..……...
13
TSA Action Alerts……………….……………………………………….……........................
15
Sample Form Letters………………………………………………………………………….
17
APPENDIX………….………………………………………………………………...……...... 22
Legislative Calendar…………………………………………………………………………..
24
UNDERSTANDING TOURETTE SYNDROME &
TOURETTE SYNDROME ASSOCIATION
TOURETTE SYNDROME (TS)
Tourette Syndrome was named after a French neuropsychiatrist who successfully assessed the disorder in the late
1800's Gilles de la Tourette syndrome (Tourette Syndrome or TS) is a neurological disorder which becomes
evident in early childhood or adolescence before the age of 18 years. TS is diagnosed by multiple motor and
vocal tics lasting for more than one year. The first symptoms usually are involuntary movements (tics) of the face,
arms, limbs or trunk. These tics are frequent, repetitive and rapid. The most common first symptom is a facial tic
(eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs. The
symptoms of TS vary from person to person and range from very mild to severe. Associated conditions can
include attention problems (ADHD/ADD, impulsiveness (and oppositional defiant disorder), obsessional
compulsive behavior, and learning disabilities. There is usually a family history of tics, TS, ADHD, OCD. TS
and other tic disorders occur in all ethnic groups.
How Many People Are Affected?
As TS often goes undiagnosed, no exact figure can be given. But it is increasingly being recognized that tics occur
more frequently than previously thought. Indeed, prevalence studies show that up to 1 in 100 children in the
U.S. have TS or another Tic Disorder.
Updated Definition of TS
Tourette Syndrome or TS is part of a spectrum of hereditary, childhood-onset, neurodevelopmental conditions
referred to as Tic Disorders. These conditions affect both children and adults, causing them to make sudden,
uncontrollable movements and/or sounds called tics (e.g. head bobbing, arm jerking, shoulder shrugging and
grunting). People with TS often have other conditions such as Obsessive Compulsive Disorder (OCD), Attention
Deficit Hyperactivity Disorder (ADHD) and learning difficulties. Symptoms can range from mild to severe and,
in some cases, can be self-injurious, debilitating and markedly reduce the quality of life. While some treatments
are available for people with TS and other Tic Disorders, approaches to care are inconsistent, medications are
often ineffective and there is no cure.
The National Tourette Syndrome Association (TSA)
Founded in 1972 in Bayside New York, TSA is the only national voluntary non-profit membership organization
in this field. The organization has grown into a major national health-related organization with more than 30 U.
S. State Chapters and many more Support Groups, and international contacts around the world.
Research
TSA funds research to look into the cause of TS and, at the same time, to lead to improved medications and
treatments for people with TS.
Education
TSA develops and disseminates videos, publications, including a CD Educators' Curriculum for families,
individuals, and medical and allied professionals. TSA's Education Advocacy program give families and
advocates the tools they need when pursuing the best program options and services for children.
Advocacy
As part of TSA’s mission of education, research and service, the Public Policy Office advocates on Capitol Hill
to Members of Congress to increase support for individuals with Tourette Syndrome (TS). We also work with
the U.S. Department of Education, National Institute of Health (NIH) and the Center for Disease Control and
Prevention (CDC) to administer public health, education and research programs.
FEDERAL ADVOCACY
Advocacy
Legislative power is broken down into various levels with state and local government however; the TSA Public
Policy Office focuses its actions on the Federal Level. Understanding the difference between what you do as
constituents and what we do as staff will help individuals to better advocate and understand their role and power
in the general policy making process. To learn more, advocates should spend time studying the Legislative
process. To assist in this effort, please visit the Library of Congress’ legislative information on Thomas
(http://thomas.loc.gov). The Website contains detailed information on the legislative process, legislators,
committees, as well as the status of pending legislation.
The term Advocacy means to speak up, to plead the case of another, or to fight for a cause. Advocacy is an
important function of most nonprofit organizations. It describes a wide range of expressions, actions and activities
that seek to influence outcomes directly affecting the lives of the people served by the organization. Advocacy
should not be confused with lobbying. Lobbying, as defined by the Internal Revenue Service, involves attempts
to influence legislation at the local, state or federal level. Lobbying always involves advocacy, though advocacy
does not always involve lobbying.
Grassroots Advocacy
Grassroots advocacy involves enlisting the support of TSA Chapters, Members, Friends and Affiliates to come
together on the same issues and goals; reaching out to the local communities, political entities, state legislators,
chambers of commerce, influential business leaders, community leaders, stirring up support from local media
including print and broadcast and the general public to form a grassroots and influence change in the TS
Community. The Public Policy Office can successfully lobby for TSA’s issues and accomplish legislative
victories ONLY with a strong grassroots.
Below is a list of past TSA Policy successes. Looking forward to the 114th New Congress we hope to further
develop a Bicameral and Bipartisan Tourette Syndrome Caucus, create momentum on passing the CARE Act
and renew funding for the TSA-CDC Education and Research Program.
TSA POLICY ISSUES
The formation of a Bipartisan Congressional Tourette Syndrome Caucus in the U.S.
House of Representatives was historic.
The Caucus was established in 2013.
The opportunity to collaborate with Members of Congress who recognizes the needs of
people with TS led us to the establishment of this Caucus.
In the new Congress we hope to expand the existing Congressional Tourette Syndrome
Caucus and develop a group of advocates in Congress who we can work with on issues
regarding Tourette Syndrome and related conditions.
2014 CONGRESSIONAL DEAR COLLEAGUE LETTER ON TS CAUCUS
Join the Congressional Tourette Syndrome Caucus
Dear Colleague,
We are writing to invite you to join the bi-partisan Congressional Tourette Syndrome Caucus.
Tourette syndrome is an inherited neurobiological disorder that affects children in all racial and ethnic groups.
The symptoms of this disorder are rapid, repeated, and involuntary movements and sounds called tics. It is
estimated that 200,000 Americans suffer from symptoms of tourette syndrome and more endure the stigma,
isolation and psychological impact of this disorder. There is no cure for tourette syndrome although some
individuals benefit from medication and other clinical treatment.
The Congressional Tourette Syndrome Caucus recognizes the needs of children and adults with tourette
syndrome and will strive to educate and involve members on the topic as it is addressed by Congress. To learn
more about the Caucus, please visit our webpage at http://cohen.house.gov/congressional-tourette-syndromecaucus.
If you have any questions about the caucus or would like to join, please contact Brittany Johnson Hernandez
(brittany.hernandez@mail.house.gov or 5-3265) in Congressman Steve Cohen’s office or Jamie Tricarico
(Jamie.tricarico@mail.house.gov or 5-7896) in Congressman Peter King’s office.
Sincerely,
Congressman Steve Cohen
Member of Congress
Co-Chair
Congressman Peter King
Member of Congress
Co-Chair
TSA POLICY ISSUES
The Public Health Education and Research Program is being administered directly by the National
Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC in partnership with the
national TSA.
The program was authorized by Congress in Title 23 of the Children’s Health Act of 2000; when the
TSA went to Congress to ask for federal support to address the extreme shortage of health care and
education providers who could understand and help people with Tourette Syndrome (TS).
The intent of the this TSA/CDC program partnership is to educate the public, train health care providers,
educators, and the general public about TS while research is being done to improve the quality of life for
individuals with TS.
Through this federal partnership we have educated tens of thousands of medical professionals and
teachers around the country about TS. One of our main priorities in the new Congress is making sure
this program continues to receive funding in the government annual budget also referred as
“Appropriations.”
2014 CONGRESSIONAL DEAR COLLEAGUE LETTER ON TSA/CDC PROGRAM FUNDING
TSA POLICY ISSUES
Our goal in the New Congress is to re-introduce the bill and increase co-sponsorship (supporters) of the
Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act.
Enactment of the CARE Act would help to stabilize plummeting funding levels for Tourette Syndrome
and the research it authorizes could benefit a whole range of neurological spectrum disorders related to
Tourette Syndrome including ADHD and OCD.
Congress can play a significant role in advancing research on TS. This legislation will build on current
NIH activities on TS and serve as an add-on to TSA’s current CDC Program partnership.
The TSA has developed a two prong advocacy mission-that is: Raising awareness of the disorder
through the CDC and expanding that effort by activating a secondary level of awareness at the NIH.
If the CARE Act passes, we can address the disorder with treatment and extensive research at the NIH,
while managing the disorder through patient education services at the CDC.
2014 CONGRESSIONAL DEAR COLLEAGUE LETTER ON CARE ACT ON TS
Improve the Lives of Individuals Living with Tourette Syndrome
Cosponsor H.R. 4221, the Collaborative Academic Research Efforts (CARE) for
Tourette Syndrome Act of 2014
Dear Colleague:
Please join me in supporting a bipartisan effort to assist individuals and their families living with Tourette syndrome by
becoming a cosponsor of H.R. 4221, the CARE for Tourette Syndrome Act. This legislation would expand and further
coordinate efforts towards research for Tourette syndrome at the National Institutes of Health (NIH).
Tourette syndrome is an often misunderstood and stigmatized disorder that impacts as many as one in 100 Americans.
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. Through expanded and collaborative research, we
can learn more about the cause and treatment of the disorder to help improve the lives of those individuals impacted by
Tourette syndrome.
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.
It is important to bring to the forefront the need for an increased commitment to preventing and treating this disorder.
It is my hope that through this legislation, we can grasp a better understanding of Tourette syndrome and in turn, help
enhance the lives of so many. Please contact Kaylan Koszela in my office for more information or to become a
cosponsor.
Sincerely,
Albio Sires
Member of Congress
COMPRESHENSIVE LIST OF ALL CONGRESSIONAL SUPPORTERS
ISSUE BY ISSUE IN THE 113TH (LAST) CONGRESS
List of TS Appropriations Dear Colleague Letters -- Co-Signers
45 US Representatives
Rep. Leonard Lance (R-7-NJ)
Rep. Peter King (R-2-NY)
Rep. Jim Gerlach (R-6-PA)
Rep. David Cicilline (D-1-RI)
Rep. Collin Peterson (D-7-MN)
Rep. Ben Ray Lujan (D-3-NM)
Rep. Albio Sires (D-8-NJ)
Rep. John Tierney (D-6-MA)
Rep. Sean Maloney (D-18-NY)
Rep. Joe Courtney (D-2-CT)
Julia Brownley (D-26-CA)
Rep. Matthew Cartwright (D-17-PA)
Rep. Debbie Schultz (D-23-FL)
Rep. Stephen F. Lynch (D-8-MA)
Rep. Henry A. Waxman (D-33-CA)
20 US Senators
Sen. Chuck Schumer (D-NY)
Sen. Ed Markey (D-MA)
Sen. Jeanne Shaheen (D-NH)
Sen. Jack Reed (D-RI)
Sen. Chris Coons (D-DE)
Sen. Blumenthal (D-CT)
Sen. Tom Carper (D-DE)
Rep. Steve Cohen (D-9-TN)
Rep. Zoe Lofgren (D-19-CA)
Rep. Sam Farr (D-20-CA)
Rep. Elijah Cummings (D-7-MD)
Rep. Sheila Jackson Lee (D-18-TX)
Rep. Chaka Fattah (D-2-PA)
Rep. Louise Slaughter (D-25-NY)
Rep. Keith Ellison (D-5-MN)
Rep. Ted Deutch (D-21-FL)
Rep. Ann McLane Kuster (D-2-NH)
Rep. Don Young (R-AK)
Rep. Mark Pocan (D-2-WI)
Rep. Chris Smith (R-4-NJ)
Rep. Tom Petri (R-6-WI)
Rep. Steve Israel (D-3-NY)
Rep. Carolyn McCarthy (D-4-NY)
Rep. Charles Rangel (D-13-NY)
Rep. Eliot Engel (D-16-NY)
Rep. Carol Shea-Porter (D-1-NH)
Rep. John Conyers (D-13-MI)
Rep. Gwen Moore (D-4-WI)
Rep. Lois Frankel (D-22-FL)
Rep. Gerald Connolly (D-11-VA)
Rep. Marc Veasey (D-33-TX)
Rep. Rush Holt Jr. (D-12-NJ)
Rep. James McGovern (D-2-MA)
Rep. Patrick Meehan (R-7-PA)
Rep. Adam Smith (D-9-WA)
Rep. Allyson Schwartz (D-13-PA)
Rep. Niki Tsongas (D-3-MA)
Sen. Bob Casey Jr. (D-PA)
Sen. Chris Murphy (D-CT)
Sen. Richard Durbin (D-IL)
Sen. Sheldon Whitehouse (D-RI)
Sen. Kirsten Gilibrand (D-NY)
Sen. Ben Cardin (D-MD)
Sen. Jeff Merkley (D-OR)
Sen. Patrick Leahy (D-VT)
Sen. Debbie Stabenow (D-MI)
Sen. Robert Menendez (D-NJ)
Sen. Scott Brown (D-MA)
Sen. Kay Hagan (D-NC)
Sen. Barbara Boxer (D-CA)
List of CARE Act Co-Sponsors
20 Representatives & 3 Senators
Rep. Albio Sires (D-8-NJ)
Rep. Jim Sensenbrenner (R-5-WI)
Rep. Zoe Lofgren (D-19-CA)
Rep. Don Young (R-AK)
Rep. Donald Payne (D-10-NJ)
Rep. Mark Pocan (D-2-WI)
Rep. Steve Cohen (D-9-TN)
Sen. Robert Menendez (D-NJ)
Rep. Charlie Rangel (D-13-NY)
Rep. Karen Bass (D-37-CA)
Rep. Leonard Lance (R-7-NJ)
Rep. Jim Himes (D-4-CT)
Rep. David Jolly (R-13-FL)
Rep. Eleanor Norton (D-DC)
Rep. Carolyn McCarthy (D-4-NY)
Sen. Charles Schumer (D-NY)
Rep. Louise Slaughter (D-25-NY)
Rep. Keith Ellison (D-5-MN)
Rep. Ray Lujan (D-3-NM)
Rep. Steve Israel (D-3-NY)
Rep. Peter Roskam (R-6-IL)
Rep. Chaka Fattah (D-2-PA)
Sen. Robert Casey (D-PA)
List of Congressional Caucus Co-Sponsors
32 US Representatives
Rep. Steve Cohen (D-9-TN)
Rep. Vern Buchanan (R-16-FL)
Rep. Steve Israel (D-3-NY)
Rep. Ann Kuster (D-2-NH)
Rep. Ben Ray Lujan (D-3-NM)
Rep. Jim Moran (D-8-VA)
Rep. Joseph Pitts (R-16-PA)
Rep. Peter Roskam (R-6-IL)
Rep. Albio Sires (D-8-NJ)
Rep. Henry Waxman (D-33-CA)
Rep. Brad Schneider (D-10-IL)
Rep. Peter King (R-2-NY)
Rep. Elijah Cummings (D-7-MD)
Rep. David Jolly (R-13-FL)
Rep. Sander Levin (D-9-MI)
Rep. Carolyn McCarthy (D-4-NY)
Rep. Jerrold Nadler (D-10-NY)
Rep. Mark Pocan (D-2-WI)
Rep. Carol Shea-Porter (D-1-NH)
Rep. Louise Slaughter (D-25-NY)
Rep. Ed Whitfield (R-1-KY)
Rep. Julia Brownley (D-26-CA)
Rep. Keith Ellison (D-5-MN)
Rep. David Joyce (R-14-OH)
Rep. Zoe Lofgren (D-19-CA)
Rep. Mike McIntyre (D-7-NC)
Rep. Bill Owens (D-21-NY)
Rep. Charlie Rangel (D-13-NY)
Rep. Adam Schiff (D-28-CA)
Rep. Adam Smith (D-9-WA)
Rep. John Yarmuth (D-3-KY)
COMMUNICATING WITH YOUR LEGISLATORS
“… I read every letter written to me by a
constituent. On several occasions I can
testify that a single, thoughtful, factual,
persuasive letter did change my mind
or cause me to initiate a review of a
previous judgment.”
-Congressman Morris Udall (D-Arizona)
Communication with elected officials is the primary weapon in an advocate’s legislative arsenal.
Grassroots communication—through letters, e-mails, faxes, phone calls and personal visits produce results in
Congress.
Communicating with your Legislators
Grassroots mail, spontaneous or organized, is a Member’s political and legislative barometer of his or her
constituents’ opinions, and is therefore seldom ignored. Incoming mail is generally matched with the appropriate
issue(s); outgoing form letters signed by an automatic signature machine are fired back. Members do not have the
time to give every piece of mail their personal attention, but on some issues, a single, well-written letter or email
is more likely to influence a Member’s decision than an avalanche of organized mail.
Essentials for Communicating with Legislators
The following are “essentials” to be followed in your communications with legislators:
 Keep it local. Obviously the local constituency is most important to the legislator. Members’ offices pay
more attention to personal communications from constituents than from any other source.
 Keep it personal. Personal forms of communication, such as letters, emails, faxes, telephone calls or
office visits, indicate a greater amount of effort and thus interest. Obviously, the more effort you put into
it, the more seriously the communication will be taken.
 Keep it concise. Given the busy nature of legislative offices, the more concise the communication, the
more likely it is to receive attention.
Methods of Communicating with Legislators
There are several ways you can convey a message to Congress:
 In Person Meeting. The most effective way of influencing your Elected Officials is through a face to face
meeting with them. Most Members make it a point to accept any meeting requests that come from their
constituents. Simply call your Congressman’s Office and ask to speak with their scheduler to set up a
meeting.
 By Email/Letter. You can go online to find the personal website of your Congressional Members to
submit your letter via email, but to be most effective, go to the Tourette Syndrome Association’s Public
Policy website http://cqrcengage.com/tsa/home to connect with your Members of Congress. This will
provide us with a copy of your letter to follow up.
 By phone call. Calling your elected officials is the easiest way of making your voice heard. Simply call
the U.S. Capitol Switchboard at 202-224-3121 and ask to be connected to your Congressman, then call
back to ask for each of your two Senators.
Put it in writing. A written communication provides a readily available record in the legislative office that can
be used whenever a staff member or legislator addresses the issue. When you have a meeting or speak with a
legislator or staff member on the phone, follow up with a letter or email, briefly summarizing your discussion and
reiterating your position.
HOW TO ADVOCATE
PREPARATION



Read and review documents provided by TSA’s Public Policy Office.
Come prepared to ask your Members of Congress:
o To join the Bipartisan Congressional Tourette Syndrome Caucus.
o
To renew funding for the Public Health Education and Research Program
on TS at the Centers for Disease Control and Prevention (CDC).
o
Co-sponsor (support) The Collaborative Academic Research Efforts for Tourette Syndrome
(CARE) Act.
Come prepared to share your story. Tell them how TS affects you. Lawmakers are very interested in hearing about
real life consequences of their legislative actions.
DAY OF THE MEETING

Dress professionally and be on time for your
meeting

Identify yourself as a constituent and
represent your community as an Ambassador

Provide a short summary of why you are
meeting with them. Be prepared to share
your story:
- Experiences on living with TS.
- Challenges and difficulties
- Needs, services and programs
Thank Congress for past support of our
policy issues and interests in supporting TS.

Express your concerns for TS Awareness,
employment, school and education services.
Healthcare needs, disability benefits and/or
medical insurance coverage issues.

• Ask your Member of Congress to join the
TS Caucus, fund the TSA-CDC Education
and Research Program and cosponsor the
CARE Act.
AFTER THE MEETING


Meeting Notes: Immediately following the meeting jot down notes about who you saw, what they learned or
knew about TS, their views on the issues you discussed and whether or not they plan to support your legislative
request, and any additional information you feel is important. Send these notes to TSA’s Public Policy Office.
Thank You Email: Obtain the business cards of any aides you met with. Send a thank you/follow up email after
your meeting to each office you met with. When you send the emails please copy us at elridge.proctor@tsausa.org and timothy.convy@tsa-usa.org.
THINGS TO KEEP IN MIND




Regardless of how you perceive the meeting to be going remain polite and continue your visit. Remember, you
are on a mission to educate and just by sharing your story you are making a difference by speaking out for the
Tourette Syndrome community.
If you cannot answer a legislator’s or aide’s question, let them know that you will find out the information and get
back to them as soon as possible and then refer them to TSA’s Policy Team.
Leave behind the Congressional folders provided by TSA for the staff members.
At the conclusion of the meeting, be sure to thank the legislator or aide for their time. Send a follow up thank you
letter. Email a copy to elridge.proctor@tsa-usa.org, timothy.convy@tsa-usa.org, or fax 202-408-3260.
ADVOCACY CAMPAIGNS
Advocacy Campaign #1: Photo Campaign
The first activity we are asking you to undertake is a State Chapter and Support Group photo campaign. We are
asking you to organize a time (this could also be at a regularly scheduled meeting or other event) to take a group
picture of your local State Chapters or Support Group. We need photos of local activists to help introduce the
TSA to Members of Congress in the new Congress and show them that we have a local presence in their
district.
How to Organize the Picture Campaign:





Recruit individuals to make up a group of 50 or more local constituents to take a picture. These can be
made up of your local TSA State Chapter and Support Groups or other local TS supporters.
Choose a location for your photo. For example, take the picture in front of your Congressman’s district
office building, the local town square or in front of TSA’s Centers of Excellence is there is one near you.
Feature some sort of message for your Congressman to show this picture is directed at him. Have
someone hold up a poster board with a short message like “TSA Supporters in (Your City and State)
congratulate (Your Congressman) on his election” or “(Your Member of Congress) Please Support
Tourette Syndrome Patients in Your Community” or another message of your choice.
Send the picture to the TSA Public Policy Office and your Member of Congress. Ask your
Representative to add the photo to their Facebook or other social media sites. If they do “Like” the photo
and ask others in your picture to as well.
Please remember to send a copy of the photo to the TSA Public Policy Office as well as your Member of
Congress!!
ADVOCACY CAMPAIGNS
Advocacy Campaign #2, Mother’s Day Campaign: 100 Letters for 100 Women
The 114th Congress will be the first time more than 100 women have been Members of Congress at the same time. To
celebrate this benchmark and as a way of raising awareness of Tourette Syndrome we are planning a letter writing
campaign called ‘100 Letters for 100 Women’. Our goal is to send at least 100 letters to each female Member of Congress
this Mother’s Day (May 10, 2015). To accomplish this we are asking women in each state to send a letter to each female
Congresswoman/Senator congratulating them on this accomplishment and asking them to support our legislative issues.
The TSA Public Policy Office will supply you with more information including sample letters and a list of all female
legislators for your state as this event becomes closer.
TSA ACTION ALERTS
What are Action Alerts?
With the internet government advocacy is easier than ever. Constituents now have the ability to contact their
elected officials almost instantly with email. When any major legislative issue involving TS arises the TSA
issues what is called an Action Alert on the TSA Public Policy Action Center website.
The Action Center provides a generic template for a letter or phone call about a specific legislative issue to be
edited and sent by anyone to their Congressional Representative with a click of their mouse.
Action Center Alerts take various forms, shapes, and styles. Some alerts require you to call your elected
officials, while others will have you send an email. Each step in completing an Alert is clearly given. These
alerts can be found on the TSA Public Policy Action Center website.
Upon entering the current Public Policy Action Center website you will see (Website subject to change):
Action Alerts will appear at the top of the page. Right now there is one Action Alert available: “Voice Your
Support for the CARE Act”. This section is regularly updated with important TS legislative issues so be sure to
revisit and take action. If there is an issue of importance you would like to take action on, simply click on the
issue. Our Action Alerts will provide you all information about that particular legislative issue as well as all the
necessary steps to make sure your voice is heard by your elected official.



Click the “Take Action” button to enter the Action Alert.
Next you will be asked to enter your contact information so that we can look up your elected officials.
Click submit to be taken to the Action Alert
After clicking submit on a Email Action Alert, you will see the following:
You will be provided with an email template on the topic of the Action Alert. Please enter any personal details you wish
to add and then click submit. Instantly your email will be sent to all the appropriate elected officials that represent your
district! There is no need to find out what your representative’s email is, Action Alerts do all of that for you.
After clicking submit on a Call Action Alert, you will see the following:
You will first be provided with a summary of the legislative issue and then a prompt as seen above. Simply read
over the prompt and follow the directions to contact your Members of Congress.
SAMPLE FORM LETTERS
We have provided sample letters for different types of communication with federal legislators below. Please edit these
samples to personalize them to your own situation and needs.
DC Appointment Request Letter:
Date: (Please make your meeting request at least 3 weeks in advance.)
[Name of Scheduler/Personal Assistant]
The Honorable [Full name of legislator]
[DC Office Address]
Washington, D.C.
Dear [Name of Scheduler/Appointment Secretary]:
My name is [full name] and I am a resident of [city and state].
On Wednesday, March 25, 2015 the Tourette Syndrome Association (TSA) will be holding its annual National Advocacy
Day on Capitol Hill. Youth Ambassadors along with their parents and other Members of the TSA will be visiting with
their Senators and Representative from 10:00 AM to 4:00 PM. As a constituent and an Ambassador for Tourette
Syndrome (TS) I would like the opportunity to meet with your office to share my story about what it is like to live
with TS.
My hope is to inform and educate your office about TS, its impact on my life and discuss what your office can do to
support Tourette Syndrome families in our community. I will be available only on Wednesday, March 25th for a
meeting.
I would like to request your support on three critical issues:
1. Support the Appropriation’s “Dear Colleague Letter” for Tourette Syndrome Public Health, Education and
Research Program at the CDC.
2. Join the Bipartisan Congressional Tourette Syndrome Caucus.
3. Cosponsor the Collaborative Academic Research Efforts for Tourette Syndrome (CARE) Act.
Thank you in advance for considering my meetings request and I look forward to hearing back from you. Given that I will
have to travel to get to DC I ask that you get back to me no later than March 10th regarding this appointment request. I
can be reached at [telephone number and email address] and if you cannot reach me you may contact, TSA’s Public
Policy Office at 202-408-6341 and 202-408-7009 or by email at timothy.convy@tsa-usa.org elridge.proctor@tsa-usa.org.
Sincerely,
[Your Name]
[Your Home Address]
District Office Appointment Request Letter:
Date: [Please make your meeting request at least 3 weeks in advance]
[Name of Scheduler/Personal Assistant]
The Honorable [Full name of legislator]
[District Office Address]
Dear [Name of Scheduler/Appointment Secretary]
My name is [full name] and I am a resident of [city and state].
I am writing on behalf of myself and several other constituents who are members of the Tourette Syndrome Association
(TSA) to request a meeting in your office on [insert requested meeting date] to share my story about what it is like to
live with TS. My hope is to inform and educate your office about TS, its impact on my life and discuss what your office
can do to support Tourette Syndome patients in our community.
I would like to request your support on three critical issues:
1. Support the Appropriation’s “Dear Colleague Letter” for Tourette Syndrome Public Health, Education and
Research Program at the CDC.
2. Join the Bipartisan Congressional Tourette Syndrome Caucus.
3. Cosponsor the Collaborative Academic Research Efforts for Tourette Syndrome (CARE) Act.
I am requesting a meeting with your District Office for a group of families with children to meet with the
Representative and/or the appropriate District Staffer on [insert requested meeting date]
Thank you in advance for your consideration of my meeting request. Upon your request, I can provide you with a list of
the meeting attendees.
I can be reached at (telephone number) and (email address).
Sincerely,
Your name
Your mailing address
Your cellphone number and email address.
Sample Meeting Confirmation Letter
[Insert Date Here]
[Name of Person you are Meeting With]
[Name of Representative]
[Building Address]
Washington, D.C. 20515
Dear [Scheduler or Staff Member You Are Meeting With]:
Thank you for setting aside time to meet with me on [Date], at [Time]. I look forward to discussing with you Tourette
Syndrome and legislative initiatives that are important to people with this disorder.
If you need to change the time of our appointment, I can be reached at [Your phone number] or [your email address].
Thank you.
Sincerely,
[Your name]
[Your address]
Sample Meeting Thank You Follow Up Letter
[Insert Current Date Here]
[Name of Representative or Staff Member]
[Building and Address]
Washington, D.C. 20515
Dear [Insert Name of Staffer or Legislator]:
Thank you for taking the time to meet with me on [Insert Meeting Date]. I appreciate your interest in learning about
Tourette Sydrome (TS) but mostly you listening to my perspective on TS. [Insert a personal statement or issues you
discussed].
As we discussed, TS is a misunderstood neurological disorder and sadly, there are still many people who do not
understand TS and its symptoms. My hope is that with your help we can educate more doctors, teachers and the general
public about TS and improve the quality of life for all Americans who have TS.
I would like to request your support on three critical issues:
1. Support the Appropriation’s “Dear Colleague Letter” for Tourette Syndrome Public Health, Education and
Research Program at the CDC.
2. Join the Bipartisan Congressional Tourette Syndrome Caucus.
3. Cosponsor the Collaborative Academic Research Efforts for Tourette Syndrome (CARE) Act.
Again, thank you for taking the time to meet with me. If you have any further questions about TS, please feel free to
contact me personally. I would also like to ask you to allow the Tourette Syndrome Association Public Policy Office to
follow up with your office on my behalf. You can also contact them at 202-408-7009 or 202-408-6341 and
elridge.proctor@tsa-usa.org or timothy.convy@tsa-usa.org.
Sincerely,
[Your name]
[Your address and phone number]
General TS Support Letter to Congress:
[Enter Date Here]
[Name of Representative or Staff Member]
[Building and Address]
Washington, D.C. 20515
Dear Congressmen/Senator [Enter their full name here.
I am a member of the Tourette Syndrome Association (TSA) and I am eager to discuss with you and your staff some of
the ways that federal legislative activity has a significant impact on the lives of people with Tourette Syndrome (TS).
As you may know, Tourette Syndrome or TS is a hereditary neurodevelopmental disorder that typically develops during
childhood and often persists into adulthood, making it a life-long condition for some individuals. The disorder is marked
by involuntary movements and sounds called tics, which can range from mild to severe and disabling. People with TS
often have other conditions, such as Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive
Disorder (OCD), which are frequently misunderstood and misdiagnosed.
TS and tic disorders affects about 1 in 100 children and adults in the US. The disorder can have a profound, negative
impact on the quality of life of those who are affected. The cause of the condition is unknown and treatment options are
very limited.
Founded in 1972, the TSA is the only national, voluntary health organization for people with TS with a mission to
improve the quality of life of all people touched by TS through education, service and research, the latter of which is to
identify the cause, control its effects, and find a cure for the disorder.
As a constituent touched by TS, I would like your support on three critical issues:
1. Sign the “Dear Colleague” Letter Supporting the Tourette Syndrome Public Health, Education and Research
Program at the CDC.
To sign on in the Senate, please contact Sara Mabry in Senator Casey’s Office or Morgan Brand in Senator
Schumer’s Office.
To sign on in the House, please contact Molly McDonnell in Congressman Lance’s Office.
2. Join the Bipartisan Congressional Tourette Syndrome Caucus.
To join, please contact Brittany Hernandez in Rep. Steve Cohen’s Office or Jamie Tricarico in Rep. Peter King’s
Office.
3. Cosponsor the Collaborative Academic Research Efforts for Tourette Syndrome (CARE) Act.
To cosponsor, please contact the Office of Congressman Sires or the Office of Senator Menendez.
If you have any questions about my requests or about the Tourette Syndrome Association please contact the TSA Public
Policy Office at 202-408-7009 or 202-408-6341 and elridge.proctor@tsa-usa.org or timothy.convy@tsa-usa.org
Thank you for giving careful attention to these critical issues and for taking action on my behalf.
Sincerely,
Enter your Name Here.
Enter your Address Here.
Enter your Tel/Email Here.
General Letter to Recruit Local Volunteers:
Dear [BLANK]:
I am excited about my new role as a volunteer State Policy Director and Advocate to bring awareness to an issue so close
to my heart, Tourette Syndrome or (TS).
The Public Policy Office within the National Tourette Syndrome Association (TSA) has established the role of State
Policy Director or State Policy Advocate to advance Tourette to the national policy agenda in Congress.
Because you or someone you know is living with TS I invite you to get involved with advocacy to share your personal
stories and make it known to Congress what it’s like to live with TS.
The TSA continues to work hard to raise public awareness and federal support to offer more services and programs to
families. The staff is compassionate and dedicated to resolving the host of issues that are so important to our community.
While we do not know exactly how many people have TS, it is increasingly being recognized that tics occur more
frequently than previously thought. Studies show that up to 1 in 100 children in the US have TS or another Tic
Disorder. The TSA recently disclosed that the burden of people with tics in our population underscores the importance
for more federal support to intensify research, increase treatment options and provide more education among professionals
and the general public.
The Public Policy Office needs our voice and support in action. Please consider advocating for yourself or someone else. I
look forward to hearing from you regarding this invitation to become a trained State Policy Advocate, but most
importantly I would like your thoughts on what we can do to better educate the public and the government about Tourette.
If I can assist you in any way please contact me at ____________ (Email and Phone) or the TSA Public Policy Office at
202-408-7009 and 202-408-6341 or elridge.proctor@tsa-usa.org and timothy.convy@tsa-usa.org.
Sincerely,
[Your name]
APPENDIX
Additional Information and Resources:
Go to: www.youtube.com/watch?v=42ZJlNV17qM#t=13 to learn how to hold a meeting with your Members of Congress.
Go to: https://www.congress.gov/legislative-process/ to learn more about the Legislative Process.
Go to http://cqrcengage.com/tsa/ to view the TSA Public Policy Engagement website (New website soon to come).
Go to http://tsa-usa.org/ to learn more about the TSA.
Go to https://www.facebook.com/TouretteSyndromeAssociationPublicPolicy to Like the Public Policy Facebook Page
SAMPLE FORM LETTERS AND SCRIPTS
Sample Call Alert
**This is a sample Telephone Call Alert on the Genetic Information Nondiscrimination Act (GINA). GINA is now law
and therefore use the draft below as an example to use when telephoning your legislators about a specific issue or
legislation.**
Call Message: Hello, My name is John Doe and I live in Silver Spring, Maryland.
I am calling as both a constituent and a member of the national Tourette Syndrome Association to ask that
the Senator/Representative support the Genetic Information Nondiscrimination Act, (GINA) S.358.
Tourette Syndrome, or TS, is a genetic, neurological disorder, characterized by involuntary movements and
sounds that are known as "tics." These tics are often times accompanied with serious impairments due to
the disorder. I am strongly concerned about the lack of basic protections against the misuse of such
genetic information in health insurance and employment practices. I strongly believe that any form of
discrimination based on genetic predisposition is wrong and should not be tolerated.
Congress must act now to end this practice. Please support all the procedural motions needed to pass
GINA. This is an issue of utmost importance to my family. I ask for your support now.
Thank you!
Sample Proclamation Memorandum:
On November 17, 2004 the House of Representatives passed by voice vote H. Con. Res. 430, a concurrent resolution
recognizing the importance of early diagnosis, proper treatment, and enhanced public awareness about Tourette Syndrome
(TS). The resolution was introduced on May 18, 2004 by Congressman C.W. Bill Young (R-FL).
A month later, on October 11, 2004 the Senate passed a similar concurrent resolution,
S. Con. Res. 113 by Unanimous Consent Agreement. Senators Gordon Smith (R-OR) and Richard Durbin (D-IL)
introduced this resolution on May 21, 2004, supporting the goals and ideals of a National Tourette Syndrome Awareness
Month.
A concurrent resolution is not a bill because it does not need the signature of the President. However, it does need to be
passed by both the House and Senate. A concurrent resolution is used to express a non-legislative point of view.
The purpose of this resolution was for Congress to recognize the need for a national TS awareness and to urge the
President to designate a TS awareness month.
At the conclusion of the 108th Congress, President George W. Bush issued a proclamation, urging the public to observe
May 15th –June 15th as TS Awareness Month. This is a tool that our grassroots can use for TS awareness campaigns and to
bring Tourette Syndrome to the forefront of today’s issues.
To celebrate TS Awareness Month locally, you can request for a proclamation by contacting your Mayors and State
Governors and don’t forget to invite the media and press to record and report on this historical moment.
Concurrent Resolution on TS Awareness Month
Expressing the need for enhanced public awareness of Tourette Syndrome and support for the National Tourette
Syndrome Awareness Month.
Whereas, Tourette Syndrome is an inherited, genetic neurological disorder characterized by involuntary, rapid, sudden
movements or repeated vocalizations;
Whereas, there are more than 200,000 Americans with Tourette Syndrome, and many thousands more who remain
undiagnosed;
Whereas, the lack of public awareness has caused a stigma—associated with Tourette Syndrome;
Whereas, early diagnosis and treatment of Tourette Syndrome can prevent physical and psychological harm;
Whereas, there is no known cure for Tourette Syndrome and treatment involves multiple medications and therapies with
costs that can be prohibitive;
Whereas, the Tourette Syndrome Association is the only national voluntary nonprofit membership organization dedicated
to identifying the cause, finding the cure, and controlling the effects of Tourette Syndrome; and
Whereas, the Tourette Syndrome Association has designated each May 15th through June 15th as National Tourette
Syndrome Awareness Month, the goal of which is to educate the public about the nature and effects of this disorder: Now,
therefore, be it
Resolved by the Senate (the House of Representatives concurring), That Congress-(1) recognizes the impact that Tourette Syndrome can have on Americans living with the disorder and
raise the importance of an early diagnosis and proper treatment of Tourette Syndrome;
(2) recognizes the need for enhanced public awareness of Tourette Syndrome;
(3) supports the designation of May 15th through June 15th as National Tourette Syndrome Awareness
Month; and
(4) encourages the President to issue a proclamation designating May 15th through June 15th as National
Tourette Syndrome Awareness Month.
LEGISLATIVE CALENDAR
DATES
• January 2015
LEGISLATIVE CALENDAR
•Convene 1st Session of 114th Congress:
• GOP Legislative Retreat: Jan 14-16.
• State of the Union Address: Jan 20.
• Democrat Legislative Retreat: Jan 28-30.
• House District Work Period:
15-16, 19, 23, 29-30.
• Senate District Work Period: Jan 19.
• Take up unfinished legislation such as
Appropriations Bill for FY2015.
Jan 6.
Jan
• February 2015
• House District Work Period:
Feb 6, 9, 16-20, 23.
• Senate District Work Period: Feb 16-20
• President’s Budget Release FY2016
•Possible Budget Committee Allocations for
House/Senate.
• March 2015
• House District Work Period:
March 613, 20, 27-31.
• Senate District Work Period: March 30-31.
• Possible Deadline for FY16 Appropriations for
House/Senate.
• April 2015
• House District Work Period:
April 110, 17, 20, 27.
• Senate District Work Period: April 1-10.
• House District Work Period:
May 4-8, 11, 22, 26-29.
• Senate District Work Period: May 25-29.
• May 2015
• June 2015
• House District Work Period:
June 5,
8, 19, 22, 29-30.
• Senate District Work Period: June 29-30.
• July 2015
• House District Work Period:
July 16, 17, 20, 31.
• Senate District Work Period: July 1-3, 6
• House District Work Period: Entire Month
• Senate District Work Period: Aug 10-31
• House District Work Period:
Sept 17, 14-15, 21-25
• Senate District Work Period:
Sept
1-7, 14, 23.
• End of FY 2015: Sept 30, 2015.
• Beginning of FY 2016: Oct 1, 2015.
• House District Work Period:
Oct
2-5, 12-16, 19, 30.
• Senate District Work Period: Oct 12-16
• House District Work Period:
Nov
6, 9-13, 20, 23-27, Dec 4, 11, 14.
Senate District Work Period: Nov 11, 23-27
• Closeout the 1st Session of Congress: Dec 18
• August 2015
• September 2015
• October 2015
• November &
December 2015
• Kick-start the NEW CONGRESS with TSA
Volunteer State Policy Directors.
• Re-establish House TS Caucus.
• Issue Joint Caucus Press Statements with
Congressional Sponsors (King and Cohen).
• Initiate Pilot Photo Campaign to introduce TS to
5-10 Members of Congress in the New Year.
• Circulate New Dear Colleague letter to ask
Members of Congress to join the Caucus.
• First Nat Advocacy Training Web: Jan 15th
• Continue to work with State Policy Directors.
• Hold Second Training Webinar for TSA Chapters
and Youth Ambassadors: Feb 19.
•.Arrange meetings on Capitol Hill for March
National Advocacy Day.
• Launch National Advocacy Campaign.
• Secure Sponsors for Appropriations.
• Prepare and submit CDC Funding request(appropriations) for Fiscal Year 2016.
• Draft and Circulate “Funding Dear Colleague
Letters” on Appropriations.
• Activate Action Alert-letter Campaign.
• Hold National Advocacy Day in March 2015.
• Follow up on Hill Meetings.
• Secure Appropriations for TS at the CDC.
• Increase TS Caucus Membership Bicameral
• “Mother’s Day” Letter Campaign.
100 Letters to 100 Women Members of Cong.
• Re-introduction of the CARE Act.
Bill may be introduced much earlier in the year.
• TS Awareness Month Campaigns:
Additional DC Hill and District State Meetings.
• Possible CARE Act – Call Action Alert.
•Prepare for appropriations committee activities.
• International Congress UK on TS: June 23-25.
• Follow up on all policy issues, District- Meetings
and Awareness Month Action Alerts.
• Monitor federal funding & committee actions.
• Launch August Recess Action Alert Petition.
• Meet with Volunteer State Policy Directors.
• TSA Meetings on Capitol Hill.
• Follow up-Volunteer State Policy Directors.
• Follow up on CARE Act activities.
•.Tentative Reception by Tourette Syndrome Caucus
about TSA’s Centers of Excellence.
•.Schedule end of year meetings on issues.
• Conclude business in 1st Session of Congress and
prepare for 2nd Session of the 114th Congress in
2016.