TSA CHAPTER MANUALS
TABLES OF CONTENTS

The text of TSA's Policies, Guidelines and Manuals should be consulted to ensure full compliance with TSA policy

CHAPTER FORMATION MANUAL

	PAGE
ORGANIZING A CHAPTER OF THE TOURETTE SYNDROME ASSOCIATION	1
A.  A LOCAL MEETING - THE FIRST STEP	2
B.  PLANNING THE FIRST MEETING	2
PURPOSE	2
OBJECTIVES	2
SCHEDULING	2
ANNOUNCING THE FIRST MEETING	2
PUBLICITY	3
C.  AT THE FIRST MEETING	4
AGENDA	4
1.  WELCOME	5
2.  VIEWING OF THE VIDEO	5
3.  INTRODUCTION	5
4.  DISCUSSION PERIOD	5
5.  SPEAKER	5
6.  BUSINESS MEETING	5
7.  RECRUITMENT OF STEERING COMMITTEE	6
8.  SET THE NEXT ORGANIZATION MEETING DATE	6
9.  REQUEST FOR CONTRIBUTIONS	6
10. SOCIAL TIME AND ADJOURNMENT	7
FOLLOW UP	7
D.  A STEERING COMMITTEE - THE SECOND STEP	7
GOAL	7
OBJECTIVES	7
SCHEDULING	8
AGENDA FOR THE WORK OF THE STEERING COMMITTEE	8
THE TASKS OF THE STEERING COMMITTEE	8
1.  REVIEW OF THE DOCUMENTS & OTHER	9
MATERIALS RELATED TO CHAPTER FORMATION
2.  SELECTION OF ACTING OFFICERS BY STEERING COMMITTEE	9
3.  SUBMITTING APPLICATION BY AUTHORIZATION TO ORGANIZE A
CHAPTER BY TOURETTE SYNDROME ASSOCIATION	10
4.  APPOINTMENT OF PROGRAM CHAIR	10
5.  REPORT OF THE FIRST MEETING OF THE PROPOSED CHAPTER TO TSA	10
6.  PLAN FOR PRESENTATION OF STANDARD CHAPTER BY LAWS
FOR ADOPTION AT THE SECOND ORGANIZATION MEETING	10
7.  PLAN FOR ELECTION OF BOARD OF DIRECTORS AT THE SECOND
ORGANIZATIONAL MEETING	10
8.  DETERMINE STATE AND LOCAL REGISTRATION REQUIREMENTS	11
SECOND ORGANIZATIONAL MEETING	11
PURPOSE	11
OBJECTIVE	11
INFORMATION	11
AGENDA	12
E.  OBTAINING PROVISIONAL CHAPTER STATUS	12
GRANTING OF PROVISIONAL CHAPTER STATUS BY TSA	12
DISSOLUTION OF THE STEERING COMMITTEE	12
F.  COMPLETION OF THE REQUIREMENTS FOR BECOMING A TSA CHAPTER
BY THE PROVISIONAL BOARD OF DIRECTORS	13
G.  HOW TO HANDLE FINANCIAL CONTRIBUTIONS BEFORE BECOMING A
CHARTER CHAPTER	14
APPENDIX

CHAPTER OPERATIONS MANUAL

	PAGE
INTRODUCTION
THE TOURETTE SYNDROME ASSOCIATION	1
PUBLIC INFORMATION AND COMMUNICATIONS	1
CLIENT INFORMATION AND EDUCATION	1
PROFESSIONAL EDUCATION	1
CLIENT SERVICES	2
RESEARCH	2
CONFERENCES	2
CHAPTERS	2
GOVERNMENT AFFAIRS	2
NATIONAL TSA / CHAPTER RELATIONS	3
AN OVERVIEW OF THE CHAPTER'S PROGRAM	4
PUBLIC AWARENESS AND CLIENT EDUCATION	5
PROFESSIONAL EDUCATION	5
CLIENT SERVICES	5
THE ORGANIZATIONAL STRUCTURE OF A TSA CHAPTER	6
MEMBERSHIP	6
OFFICERS AND DIRECTORS	6
JOB DESCRIPTIONS	7
CHAPTER PRESIDENT	7
VICE PRESIDENT	7
TREASURER	8
SECRETARY	8
DIRECTOR	9
COMMITTEES & OTHER BOARD APPOINTED POSITIONS	9
SUPPORT GROUP COORDINATOR	9
NOMINATING COMMITTEE	9
OTHER REGULAR AND SPECIAL COMMITTEES	10
MEMBERSHIP COMMITTEE	10
NEWSLETTER COMMITTEE	10
TELEPHONE COMMITTEE	10
EDUCATION COMMITTEE	11
COMMUNITY RELATIONS COMMITTEE	11
CLIENT SERVICES	12
FUNDRAISING	12
PROFESSIONAL / MEDICAL ADVISORY	12
CHAPTER OPERATING PROCEDURES	13
CHAPTER OFFICE	13
LETTERHEAD	13
MAILING LIST / DATA BASE	13
CHAPTER FILES	13
FISCAL MANAGEMENT AND FINANCIAL REPORTS	14
FISCAL YEAR	14
INSPECTION OF BOOKS	14
ANNUAL BUDGET	14
QUARTERLY FINANCIAL REPORTS TO TSA	14
REQUIRED REPORTS TO LOCAL, STATE & FEDERAL GOV'TS	14
CHAPTER SUPPORT GROUP / CHAPTER REPRESENTATIVES	14-15
MATERIALS SUPPLIED BY NATIONAL TSA FOR CHAPTER OPERATIONS	15-16
SAMPLE SIGN-IN SLIP FOR CHAPTER MEETINGS	17
SAMPLE MEMBER INFORMATION SHEET	18
CHECK LIST FOR NEW PRESIDENTS	19-20

PROGRAM MANUAL Vol. I
Education&Awareness

	PAGE
I.  INTRODUCTION	1
II.  MEMBER AND FAMILY EDUCATION	2
A.  EDUCATIONAL MATERIALS TO MEMBERS & THEIR FAMILIES	2
B.  EDUCATIONAL PROGRAMS AT CHAPTER & SUPPORT GROUP MTGS	2
III.  PUBLIC EDUCATION AND AWARENESS	3
A.  MEDIA COVERAGE	3
i.  NEWSPAPERS, RADIO & TV HUMAN INTEREST & FEATURE  COVERAGE
B.  OTHER APPROACHES TO THE MEDIA	5
i.  LOCAL NEWS COVERAGE	5
ii.  FOLLOW UP PROCEDURES	5
iii.  PUBLIC SERVICE ANNOUNCEMENTS & PRINT ADS	6
C. THE ANNUAL NATIONAL TS/CHAPTER AWARENESS CAMPAIGN	7
D. COOPERATION WITH OTHER ORGANIZATIONS	7
i. PROFESSIONAL ORGANIZATIONS - NATIONAL & STATE PROFESSIONAL           CONFERENCES	7
ii.  LOCAL HEALTH FAIRS	8
iii.  SERVICE ORGANIZATIONS	8
iv.  LOCAL PARENT/SCHOOL ORGANIZATIONS	8
v.  POLICE DEPARTMENTS/LOCAL SOCIAL SERVICE AGENCIES	8
vi.  LOCAL CHAMBER OF COMMERCE	9
vii.  RELIGIOUS ORGANIZATIONS	9
IV.  PROFESSIONAL EDUCATION AND AWARENESS	10
A.  PEDIATRICIANS AND GENERAL PRACTITIONERS	10
B.  OPHTHALMOLOGISTS	10
C.  NEUROLOGISTS	10
D.  MENTAL HEALTH PRACTITIONERS	10
E.  SCHOOL NURSES	10
F.  OCCUPATIONAL THERAPISTS	11
V.   SAMPLE #1 PRESS RELEASE TO ANNOUNCE NEWSWORTHY EVENT       CONCERNING TOURETTE SYNDROME	13
VI.   SAMPLE #2 COVER LETTER TO NEWSPAPER EDITORS TO ACCOMPANY A        PRESS RELEASE	15
VII.  SAMPLE #3 LETTER TO RADIO PROGRAM DIRECTORS TO ANNOUNCE        NEWSWORTHY EVENT CONCERNING TOURETTE SYNDROME	16
VIII. SAMPLE #4 LETTER TO OFFER PARTICIPATION IN AN INTERVIEW SHOW	17
IX.   SAMPLE #5 INTERVIEW SHOW GUIDELINES FOR TOURETTE SYNDROME       COVERAGE ON LOCAL PROGRAMS	18
X.   SAMPLE #6 LETTER OF THANKS FOR PARTICIPATION       IN INTERVIEW SHOW	19
XI.  SAMPLE #7 LETTER TO RADIO STATIONS TO REQUEST      AIRING OF PUBLIC SERVICE ANNOUNCEMENT	20
XII.  SAMPLE #8 PUBLIC SERVICE ANNOUNCEMENT: RADIO       SPOT NO. T1 30 SEC	21
XIII. SAMPLE #9 FACTS ABOUT TOURETTE SYNDROME       (ANSWERS TO COMMON QUESTIONS)	22
XIV. SAMPLE #10 LETTER OF THANKS FOR AIRING PUBLIC SERVICE        (ANNOUNCEMENT)	23
XV.  DO YOU KNOW SOMEONE???? FLIER	24

PROGRAM MANUAL Vol. II Service Programs, Research

	PAGE
I.  SERVICE PROGRAMS FOR TSA CHAPTERS AND SUPPORT GROUPS	1
A.  INFORMATION AND REFERRAL FOR PEOPLE WITH TOURETTE         SYNDROME  AND THEIR FAMILIES	1
1.  HANDLING TS INQUIRIES	1
ADVANCE PREPARATIONS	1
RESPONDING TO TS INQUIRIES	2
MAKING A REFERRAL	4
2.  DEVELOPING A CHAPTER REFERRAL INFORMATION FILE	5
THE CHAPTER REFERRAL INFORMATION CHAIR	5
COLLECTING REFERRAL INFORMATION	6
ORGANIZING AND UPDATING REFERRAL	7
3.  THE TSA INFORMATION AND REFERRAL SERVICES DEPT	7
B.  RESPONDING TO CRISIS CALLS	9
LISTENING	9
CALMING	9
REFERRAL	11
THE SUICIDAL CALLER	12
SUMMARY	13
C.  PARENTING	14
SOME CASE STUDIES	16
WHAT CAN A TSA CHAPTER DO TO HELP	17
D.  TOURETTE SYNDROME RAP SESSIONS	18
1.  WHAT IS A RAP SESSION	18
2.  DETERMINING THE INTEREST IN RAP SESSIONS	19
3.  LEADERSHIP OF RAP SESSIONS	19
LAY LEADERSHIP	19
PROFESSIONAL LEADERSHIP	20
INFORMAL LEADERSHIP	20
4.  WHAT RAP SESSIONS CAN ACCOMPLISH	21
5.  DISCUSSION SUGGESTIONS	21
6.  CONCLUSION	23
II.  THE NATIONAL TOURETTE SYNDROME ASSOC. RESEARCH PROGRAM	24
A.  CHAPTER SUPPORT OF THE TSA RESEARCH PROGRAM	24
CHAPTER ASSISTANCE IN NON-TSA SPONSORED PROGRAMS	25
B.  THE TSA BRAIN BANK PROGRAM	25
1.  HOW TO PRESENT THE BRAIN TISSUE PROGRAM	26
2.  WHO CAN DONATE BRAIN TISSUE	26
3.  HOW TO GIVE PERMISSION	26
4.  DEATH OF A DONOR	26
5.  CAN SOMEONE OTHER THAN DONOR DECIDE TO MAKE THE GIFT	26
6.  HOW WILL BRAIN TISSUE BE USED	26
7.  IS THERE AN AGE REQUIREMENT FOR DONATIONS	27
8.  WHO UNDERWRITES THE COST OF BRAIN REMOVAL	27
9.  WILL ORGAN DONATION AFFECT FUNERAL AND BURIAL ARRANGEMENTS?	27

CHAPTER ADVOCACY MANUAL

	PAGE
I.  WHAT AN ADVOCATE IS	1
II.  THE CHAPTER ADVOCACY PROGRAM	1
III.  WHAT THE ADVOCATE DOES	1
IV.  A CHAPTER ADVOCATE SHOULD BE PREPARED	2
A.  LEARN ABOUT LAWS, SERVICES AND BENEFITS APPLICABLE TO
PEOPLE WITH TS	2
B.  KNOW WHEN TO CALL FOR HELP OR REFER CLIENTS TO AN
ATTORNEY FOR LEGAL REPRESENTATION & WHERE/WHOM TO CALL	3
C.  OTHER SOURCES OF ADVOCACY HELP	4
V.  SUMMARY	5

FUNDRAISING MANUAL

        I.  SETTING UP SUB-COMMITTEES

	PAGE
SECTION I: GENERAL FUNDRAISING	1
I.  GUIDELINES FOR TSA CHAPTER FUNDRAISING ACTIVITIES	1
A.  JOINT TSA-CHAPTER FUNDRAISING ACTIVITIES	1
I.  UNIFIED DUES PROGRAM	1
II.  ANNUAL AWARENESS FUNDRAISER	2
III.  COMBINED FEDERAL CAMPAIGN (CFC)	3
IV.  COMMUNITY HEALTH CHARITIES CHC	3
V.  JOINT NATIONAL - CHAPTER SOLICITATION OF GRANT MONIES	3
II.  CHAPTER ORIGINATED FUNDRAISING ACTIVITIES	4
A.  CONSULTATION WITH THE VICE PRESIDENT OF CHAPTER SERVICES	4
B.  CONSIDERATION OF RISK LIABILITY	5
I.  HIGH RISK ACTIVITIES	5
II.  DIRECTOR AND OFFICER INSURANCE (D&O)	5
III.  ETHICAL AND LEGAL CONSIDERATIONS	6
iv.  GENERAL HINTS AND HELPS	7
V.  TEN STEPS TO ORGANIZE THE PLANNING OF AN EVENT	8
A.  SAMPLE REVERSE TIME-LINE FOR AUCTION
VI.  HOW TO SOLICIT DONATED GOODS	9
VII.  SAMPLE LETTER TO REQUEST DONATED OR DISCOUNTED ITEMS	10
VIII.  SUGGESTED COMMITTEES	11
IX.  REVERSE TIME-LINE	12
A.  SAMPLE REVERSE TIME-LINE FOR AUCTION	12
X.  EVENT BUDGET	13
SECTION II: DIRECT SOLICITATIONS	14
I.  DIRECT IN-PERSON SOLICITATION	14
A.  OVERVIEW	14
II.  DIRECT MAIL SOLICITATION	17
A.  OVERVIEW	17
B.  SAMPLE DIRECT MAIL APPEAL LETTER ON CHAPTER LETTERHEAD	17
III.  GRANT WRITING	18
A.  OVERVIEW	18
B.  WHO TO SUBMIT A GRANT TO	19
IV.  BOILER PLATE GRANT PROPOSAL	21
A.  PROPOSED BUDGET	24
SECTION III: SPECIAL EVENT FUNDRAISING	25
I.  AUCTIONS	25
A.  OVERVIEW	25
B.  TYPES OF AUCTIONS AND/OR AUCTION CATEGORIES	25
I.  LIVE AUCTION	25
II.  SILENT AUCTION	25
III.  CHINESE AUCTION	26
IV.  BALLOON AUCTION	26
C.  STEPS TO A SUCCESSFUL AUCTION	26
I.  SETTING UP SUB-COMMITTEES	27
A.  SOLICITATION COMMITTEE	27
B.  COLLECTION/INVENTORY/CATALOGUE COMMITTEE	27
C.  LOGISTICS/DECOR COMMITTEE	27
D.  FINANCE COMMITTEE	27
E.  PROMOTION COMMITTEE	27
F.  ENTERTAINMENT/FOOD COMMITTEE	27
D.  SAMPLE FORMS FOR AUCTION	28
I.  SAMPLE RECORD CARD FOR DONATED AUCTION MDSE	28
II.  SAMPLE SILENT AUCTION FORM	29
II.  CLUBS AND ORGANIZATIONS	30
A.  OVERVIEW	30
B.  LIST OF ORGANIZATIONS	30
C.  TSA HAS TWO ESTABLISHED SPONSORS	31
I.  FBLA (FUTURE BUSINESS LEADERS OF AMERICA)	31
II.  AERHO (ALPHA EPSILSON RHO)	31
III.  A-THONS	32
I.  OVERVIEW	32
II.  TYPES OF A-THON	32
A.  BIKE A THON	32
B.  BOWL-A-THON	32
C.  CUT-A-THON	32
D.  KITE-A-THON	32
E.  MARTIAL ARTS-A-THON	33
F.  READ-A-THON	33
G.  SKI-A-THON	33
H.  WALK-A-THON	33
I.  DANCE-A-THON	33
J.  OTHER-A-THONS	33
IV.  PUT THE FUN INTO YOUR FUN-A-THON	33
V.  TIME TO PLAN	34
VI.  EASY SALE - KNOWN ENTITY	34
VII.  TEAM EVENTS	34
VIII.  RAFFLE	34
IX.  A-THON FORMS	34
A.  PLEDGE COLLECTION SHEET	35
B.  REQUEST FOR CONTRIBUTIONS	36
C.  REQUEST FOR BUSINESS OR CORPORATE SPONSORSHIP	37
D.  THANK YOU	38
E.  SAMPLE NEWS RELEASE	39
X.  GARAGE/CRAFT/PLANT/BAKE SALES	40
A.  OVERVIEW	40
B.  GARAGE/YARD/TAG/BASEMENT SALES	40
C.  CRAFT SALES	40
D.  PLANT SALES	40
E.  BAKE SALES	40
F.  COOKIE WALKS	40
XI.  STEPS TO ORGANIZE SALES	41
A.  SET UP A COMMITTEE	41
B.  CHOOSE A DATE	41
C.  CHECK ON PERMITS	41
D.  ORGANIZE YOUR MERCHANDISE COLLECTION	41
E.  SET UP A VOLUNTEER SCHEDULE	41
F.  MAKE CERTAIN YOU HAVE BAGS	41
G.  SET UP AN ELECTRICAL OUTLET	41
H.  SET UP A CD/CASSETTE/VIDEO CENTER	41
I.  COMBINE	41
J.  MARK ALL MERCHANDISE	41
K.  DISPLAY	41
L.  SET SPECIFIC HOURS	42
M.  ARRANGE YOUR LOCATION	42
N.  TSA AWARENESS	42
O.  PUBLICIZE	42
XII.  HOLIDAY GIFT WRAP AT MALL	43
A.  OVERVIEW	43
B.  STEPS FOR ORGANIZING	43
C.  CHOOSE YOUR HOLIDAY & CORRECT TIME FRAME FOR THAT HOLIDAY	43
D.  ESTABLISH WHAT IS A FAIR PRICE	43
E.  ADVERTISE	44
F.  DISCOUNT COUPONS	44
XIII.  JUST FOR FUN & REGIONALLY APPROPRIATE EVENTS	45
A.  OVERVIEW	45
B.  MEADOW PIE BINGO	45
C.  RUBBER DUCK RIVER RACE	45
XIV.  SWEEPSTAKES - DOOR PRIZES - DRAWINGS	46
A.  OVERVIEW	46
B.  PERMITS	46
C.  SELECTING AND SECURING DONATED ITEMS	46
D.  TYPES OF DRAWINGS	47
I.  THEME DRAWINGS	47
2.  50/50	47
3.  WINNER'S CHOICE	47
4.  LIMITED TICKET	47
5.  GROCERY SWEEPSTAKES	47
XV.  SAMPLE TICKETS	48
XVI.  WINE TASTING PARTY	49
A.  OVERVIEW	49
B.  STEPS TO A SUCCESSFUL WINE TASTING PARTY	49
C.  ESTABLISH SUB-COMMITTEES	49
1.  WINE/FOOD COMMITTEE	49
2.  PROGRAM COMMITTEE	49
3.  TICKET/SALES/SECURITY COMMITTEE	49
4.  PROMOTION COMMITTEE	49
XVII.  MAJOR DOLLAR FUNDRAISING - DINNER DANCE	50
A.  DINNER DANCE	50
B.  THEME EVENT	50
C.  HONOREE	50
1.  SPORTS FIGURE	50
2.  PHILANTHROPIST	50
3.  CELEBRITY	50
4.  HIGHLY ACCLAIMED	50
5.  CORPORATE SPONSOR	50
D.  DATE & VENUE	50
E.  COMMITTEES	51
1.  DINNER DANCE COMMITTEE & CHAIR	51
2.  HONORARY DINNER DANCE COMMITTEE & CHAIR	51
3.  BANQUET COMMITTEE	51
4.  INVITATION COMMITTEE	51
5.  JOURNAL COMMITTEE	51
6.  DECOR/THEME COMMITTEE	51
7.  AUCTION COMMITTEE	51
8.  SEATING COMMITTEE	51
9.  AWARD COMMITTEE	51
10.  SPONSORSHIP/UNDERWRITING COMMITTEE	51
11.  PUBLICITY COMMITTEE	51
F.  FINANCIAL PROCEDURES	51
G.  ACKNOWLEDGMENTS	52
H.  VOLUNTEER RECOGNITION	52

SUPPORT GROUP MANUAL

	PAGE
1.  INITIATING A TSA SUPPORT GROUP	1
A.  Definition of a TSA Support Group	1
B.  Chapter Authorization to Begin to Form a Support Group	1
C.  Setting the Time and Place of the First Meeting	2
D.  Announcement of the Meeting by the TSA Chapter	2
2.  PLANNING AND CONDUCTING THE FIRST SUPPORT GROUP MEETING	3
A.  Local Publicity	3
B.  Responding to Inquiries That Result from Publicity	3
C.  The First Meeting of the Support Group	3
You will need	3
Before the meeting	4
At the meeting	4
The program of the first meeting	4
Welcome	4
Viewing of a TSA film	4
Speaker (if invited)	4
Introductions	4
Discussion period	4
Business Meeting	4
Begin to establish a Steering Committee	5
Plan for future meetings of a support group	5
Adjournment and social time	5
D.   Formation of a Steering Committee	5
E.   Follow-up After the First Meeting	5
3.  AFFILIATION OF THE SUPPORT GROUP WITH THE CHAPTER	6
A.   Affiliating With the Chapter	6
B.  Ongoing Reporting to the Chapter	6
DOCUMENTS FOR BEGINNING TO FORM A SUPPORT GROUP
CONFIRMATION OF REVIEW OF THE TSA SUPPORT GROUP FORMATION
MANUAL PRIOR TO ANNOUNCEMENT OF A SUPPORT GROUP IN FORMATION	7
SAMPLE ANNOUNCEMENT OF A SUPPOR GROUP IN FORMATION AND A
REQUEST THAT THE CHAPTER SEND THE ANNOUNCEMENT	8
INCLUDED MATERIALS
STATEMENT OF UNDERSTANDING, the document through which	1-A
the support group becomes formally affiliated with the TSA
TSA CHAPTER RELATIONS POLICY STATEMENT	1-B
CHAPTER BYLAWS will be sent by the Chapter Support Group Coordinator	1-C
TSA POLICY REGARDING DISTRIBUTION AND REPRODUCTION OF TSA	1-D
TSA MATERIALS
FINANCIAL ARRANGEMENTS BETWEEN A TSA CHAPTER AND AN	1-E
AFFILIATED SUPPORT GROUP
SUPPORT GROUP BUDGET FORM	1-F
Q & A AND CATALOG OF PUBLICATIONS AND VIDEOS	1-G