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The following list of TSA policies and guidelines has been assembled at the request of and for the convenience of TSA chapter leaders and is not intended to be an exhaustive listing of all TSA policies and guidelines relating to a particular topic. Chapter leaders are expected to have reviewed and familiarized themselves with all appropriate TSA policies, TSA guidelines, and TSA manuals. The text of such policies, guidelines and manuals should be consulted to ensure full compliance with TSA policy
1. POLICY STATEMENT ON CONFIDENTIALITY
2. CONFLICT OF INTEREST POLICY
3.PRACTICES AND POLICIES REGARDING DISTRIBUTION AND REPRODUCTION OF TSA EDUCATIONAL MATERIALS
4. GUIDELINES FOR TSA CHAPTER NEWSLETTERS
products or services mentioned in newsletter
independently produced TS material
products or services advertised
6. GUIDELINES FOR RECRUITING, SELECTING, AND RETAINING EFFECTIVE SUPPORT GROUP LEADERS
9. GUIDELINES FOR CHAPTER PROFESSIONAL ADVISORY COMMITTEE(S)
1. POLICY STATEMENT ON CONFIDENTIALITY It is the policy of the Tourette Syndrome Association to respect the privacy of all members of the Association and participants in the activities of the Association and its Chapters. To implement this policy, the Tourette Syndrome Association has adopted the following practices:
RELEASE OF INFORMATION ABOUT MEMBERS OF TSA OR PARTICIPANTS IN TSA ACTIVITIES:
Before releasing any information (including, but not limited to, names, addresses, telephone numbers and photographs) about any member of TSA or any participant in TSA activities, TSA and its chapters will obtain written permission from individuals 18 years or older. Written permission to release information about children under 18 years of age will be obtained from custodial parents or guardians.
This policy applies to, but is not limited to:
CONFIDENTIALITY OF MAILING LISTS AND OTHER ROSTERS OF MEMBERS AND/OR PARTICIPANTS IN TSA ACTIVITIES
It is the policy of the Tourette Syndrome Association and of its affiliated chapters not to release its mailing lists or other rosters of members and/or participants in the activities of TSA to any other organization for any purpose.
National TSA and its affiliated chapters are a unified organization. TSA, therefore, has established the policy of sharing between the Association and its affiliated chapters the names of individuals from thechapter area who inquire about TS. The process implementing this policy is defined in the TSA Chapter Relations Policy Statement and in the Chapter SupportGroup Manual.
Adopted by the TSA Board of Directors March 3, 1996
2. CONFLICT OF INTEREST POLICY
This Conflict of Interest Policy governs all affairs of The Tourette Syndrome Association, Inc., TSA Chapters, TSA Support Groups and all other groups formally affiliated with TSA, Inc., and applies to all documents which define TSA policies and procedures.
I. CONCERNING COMPENSATION AND OTHER PAYMENTS TO MEMBERS OF BOARDS OF DIRECTORS, OTHER VOLUNTEERS, AND EMPLOYEES
A. No Director, Officer, employee or other volunteer, or any member of his or her immediate family (defined as brothers and sisters, whether by the whole or half blood), spouse, ancestors, and lineal descendants, his or her partner, or an organization which employs or is about to employ any of the foregoing (collectively the "Covered Persons") of the Tourette Syndrome Association, Inc. (the Association) shall receive any payment, salary, fee, honorarium or other compensation or thing of value of any kind from the Association or other party as a result of his/her position or affiliation with the Association,except as may be specifically authorized by the Association Board of Directors and except, as to employees, for compensation paid or payable to them by the Association in the ordinary course. B. Directors, Officers and other volunteers of the Association are expected to meet their own expenses associated with their participation in the work of the Association. Reimbursement of expenses of officers, directors or other volunteers in unusual circumstances may be authorized on an individual basis by the Association Executive Committee or by the Chapter Board of Directors. C. Non-employee Covered Persons may not receive compensation from the Association and/or third parties in connection with activities sponsored or undertaken by the Association. D. Employees of the Association or its chapters are ineligible to serve as Officers or Directors of the Association.
A. A conflict of interest may exist when the interests of any Covered Person may be seen as competing or conflicting with the interests of the Association or when a Covered Person directly or indirectly has a relationship with, or financial interest in, a person or entity supplying goods,equipment or services to the Association or one from whom the Association leases property. All Covered Persons shall scrupulously avoid actual conflicts of interest as well as the appearance of conflict of interest in their activities associated with the Association.
1. Officers, Directors and Volunteers: Officers, Directors and volunteers of the Tourette Syndrome Association shall not use their relationship or activities with the Association to benefit their business activities or other financial endeavors or to promote or solicit clients for their individual private professional practices or that of a group to which they may belong.
2. Employees: Employees of the Association or members of their immediate families shall not maintain any business or professional relationship, activity or ownership that creates a conflict between personal financial interests and the interest of the Association unless the conflict is disclosed to the Association in accordance with the compliance procedures described below.B. The areas for potential conflicts of interest and the nature of conflicting interests noted above are not exhaustive. Conflicts might occur in other areas or through other relations. It is assumed that the directors, officers, and management employees will recognize such areas and relations by analogy.
C. The fact that one of the interests described above exists does not necessarily mean that a conflict exists, or if one does exist, that it is material enough to be of practical importance. It is also possible, upon full disclosure of all the relevant facts and circumstances, that doing business with a related organization is not necessarily adverse to the interests of the Association. However, it is the policy of the Association that the existence of any of the conflicting interests described above shall be fully disclosed before any transaction is authorized. It shall be the continuing responsibility of Directors, Officers, and management-level employees to scrutinize their transactions and outside business interests and relationships for potential conflicts and to immediately make such disclosures.
D. A copy of this Conflict of Interest Policy shall be furnished to each Director, Officer and employee of the Association and of its Chapters, who shall be asked to sign a statement indicating they have read the policy and will conduct themselves in accordance with it. Potential nominees to Boards of Directors shall be advised of the policy before nomination. All volunteers of the Association will be apprised of the Conflict of Interest Policy and the duty to comply with its provisions through publications and communications of the Association.
Through Association publications and communications members of Boards of the Association, employees, and volunteers shall be reminded annually of the provisions of the Conflict of Interest Policy and of their duty to comply.
III. PROCEDURES FOR ADDRESSING POSSIBLE CONFLICT OF INTEREST
A. Any possible conflict of interest shall be disclosed by the person involved to the President, or, if the President is the one with the conflict, to the Chairman, who shall bring it to the attention of the Board.
1. An interested person may make a presentation at the Board, but after such presentation, he or she shall leave the meeting during the discussion of, and the vote on, the transaction or arrangement that results in the conflict of interest.
2. The Chairman of the Board shall, if appropriate, appoint a disinterested person or committee to investigate alternatives to the proposed transaction or arrangement.
3. After due diligence has been exercised, the Board shall determine whether the Association can obtain a more advantageous transaction or arrangement with reasonable efforts from a person or entity that would not give rise to a conflict of interest.
4. If a more advantageous transaction or arrangement is not reasonably attainable under circumstances that would not give rise to a conflict of interest, the board shall determine, by a majority vote of the disinterested Directors, whether the transaction or arrangement is in the Association’s best interest and for its own benefit and whether the transaction is fair and reasonable to the Association and shall make its decision as to whether to enter into the transaction or arrangement in conformity with such determination.
5. The decisions of the Board on these matters will rest in their sole discretion, and their first concern must be the welfare of the Association and the advancement of its purposes. If the Association does engage in transactions with such an organization, then the Covered Person with such a conflict shall be prohibited from participating in the selection, award, or administration of any contract.
6. The minutes of the Board or committee considering a conflict of interest shall contain:a. The names of the persons who disclosed or otherwise were found to have a financial interest in connection with an actual or possible conflict of interest, the nature of the financial interest, any action taken to determine whether a conflict of interest was present, and the Board’s decision as to whether a conflict of interest in fact existed.
b. The names of the persons who were present for discussions and votes relating to the transaction or arrangement, the content of the discussion, including any alternatives to the proposed transaction or arrangement, and a record of any votes taken in connection therewith.B. Duality of Interest on the Part of Volunteers Who Also Engage in Professional Practice with TS Clients for a Fee: A volunteer leader of the Association who also engages in professional practice (for example, as a medical practitioner, psychologist, social worker, education consultant, speech therapist, etc.) in which he/she sees TS clients for a fee shall notify the President of the Association of the duality of interest, who shall consult with the Board of Directors to determine if a conflict of interest exists. A volunteer leader of TSA Chapter who also engages in such a professional practice shall notify the Chapter President who shall consult with the Vice President of Chapter Services on this duality of interest so that a determination can be made as to whether a conflict of interest exists.
C. Possible Conflicts Not Called to the Attention of the Board by the Individual Involved. In the event a conflict of interest appears to have developed on the part of a Covered Person which has not been called to the attention of the Board of Directors, the persons aware of that possible conflict of interest, will bring it, in writing, to the attention of the President (or, if possible conflict of interest on the part of the President is the source of concern, to the attention of the Chairman). The President or the Chairman will discuss the problem with the interested person. If it is then deemed appropriate, the President or Chairman will ask that the procedure outlined above for addressing possible conflicts of interest be followed.
D. If the appropriate Board of Directors determines that a conflict of interest does exist, the Board will determine appropriate action to resolve the conflict, and will advise the interested individual as to its decision. In the event that a conflict of interest question in a chapter is not fully resolved by action of the chapter Board of Directors, the national TSA Board of Directors will take final action on the matter.
Adopted as “Code of Conduct” March 3, 1996
Revised as “TSA Conflict of Interest Policy” and
approved by the TSA Board of Directors on November 3, 2000
3. PRACTICES AND POLICIES REGARDING DISTRIBUTION AND REPRODUCTION OF TSA EDUCATIONAL MATERIALS
One of the most important functions of TSA and its chapters is to provide printed and audiovisual educational material to people with Tourette Syndrome, their families, professionals who diagnose and treat the disorder, and the general public. To achieve this, TSA has created a comprehensive selection of educational materials for chapters to use and distribute.
I. TSA LITERATURE AND OTHER WRITTEN MATERIALS
To reach the widest possible audience, TSA encourages its chapters to seek opportunities to distribute TSA material to appropriate individuals and groups, and to arrange for mailings of TSA materials by professional groups to their members.
TSA has placed most of its publications on its website, www.tsa-usa.org. Chapters may purchase publications through the website at the listed price and download them directly to home and office computers.
A. Chapter downloading and printing of TSA literature: After purchasing and downloading one copy, chapters may print as many copies of a publication as they need. If the publication, copies of which are to be made, is not downloaded from the national TSA website immediately before printing, the chapter must check with national TSA to assure that the most recent version of the document is reproduced.
B. Ordering literature from national TSA: Printed copies of literature may be ordered from TSA and is available to affiliated chapters at 50% of the catalog price. Such orders will be filled at TSA discretion through the TSA in-house printing service or from a local bulk printer. However, the following lead-times must be allowed:Quantities:
Orders for up to 200 total copies must be received at national TSA at least 3 to 4 weeks (15 to 20 working days prior to the date of chapter need.
Orders for more than 200 total copies must be received at national TSA at least 4 weeks (20 working days) prior to the date of the chapter need.
For exceptionally large orders (200+ of several different publications) chapters must contact the national TSA Publications Department well in advance to determine the lead-time necessary for the order to be filled. This may be more than 4 weeks (more than 20 working days).C. Sale by chapters of TSA literature produced from downloaded TSA files or purchased from national TSA
1. Chapters may sell literature printed from downloaded TSA publications at prices that do not exceed the cost of the chapter of reproducing the downloaded TSA publications.
2. Chapters may sell TSA literature purchased from TSA at prices that do not exceed the reduced price which the chapter has paid. Chapter announcements of the sale of TSA literature at reduced rates shall acknowledge the TSA discount to the chapter.1. The entire text of the publication, including inserts, must be reproduced to assure that the entire message of the material is transmitted, that TSA’s copyright is acknowledged, and that full credit is given to authors and underwriters.
2. Local/national copying services should be used by chapters to maintain the professional appearance.
3. National TSA’s name and address must not be removed from publications reproduced by the chapter. If the name and address of the distributing chapter or organization is added to the publication, it should be placed on the inside or outside of the back cover and be preceded by the statement: “Reproduced by permission of the Tourette Syndrome Association, Inc., Bayside, N,Y”.
4. If a statement acknowledging the source of funds for local reproduction and/or distribution of TSA material is required, that statement must not imply that the material was produced by the local group or funding source, or that the work on which the material was based was conducted by the local group or funding source.
II. TSA AUDIO-VISUAL MATERIALS
TSA video materials include educational video tapes and TV and radio public service announcements.
A. Video Tapes: Video tapes may be purchased from TSA at prices that reflect TSA’s ability or order in quantity. TSA prices represent TSA’s original cost of production plus the costs of reproduction, handling, and shipping. Chapters and individual TSA members should understand that TSA must be able to recover the full cost of producing and handling if TSA is to be able to continue to produce and distribute new educational video material.
TSA’s videos are copy protected; thus, chapters are not authorized to reproduce TSA videos. However, for bulk orders (15 or more of the same tape), discount prices can be arranged.
B. Public Service Announcements: When a new public service announcement is produced, it is initially distributed by TSA to stations throughout the country, with notification to chapters as to which stations in their areas have received the PSA. This enables the chapter to contact TSA and arrange for additional sets of materials to be sent to stations which were not included in the original distribution.
Duplication by chapters of TSA’s broadcast-quality PSA's is not authorized, as television stations have a broadcast standard that ensures that only good quality images will be sent electronically to home TV.
4. GUIDELINES FOR TSA CHAPTER NEWSLETTERS
1. Chapter Newsletter Disclaimers
To avoid misunderstanding and, in some instances, possible liability, TSA chapters are asked to carry the appropriate disclaimer(s), as indicated below, in chapter newsletters.
A. Disclaimer Relating to Information, Products or Services Referred to in Chapter Newsletters: To avoid the appearance of endorsing information, products or services mentioned in material presented in its newsletter, national TSA includes a disclaimer similar to the following in every edition of the national TSA Newsletter. Chapters are asked to do the same and to place the following disclaimer in all editions of chapter newsletters:
“The TSA, Inc. and the (Name of chapter) do not endorse products, services or manufacturers. Such names appear only as information for our members. TSA assumes no liability whatsoever for information about or the use of any product or service mentioned.”
B. Disclaimer Relating to Chapter Newsletter Information about Independently Produced TS Material: In recent years many people have become involved professionally with Tourette Syndrome and much independently produced material on TS has become available -- books; tapes; newspaper, magazine, and newsletter articles; speeches; etc. The Tourette Syndrome Association Medical Advisory Board is not in a position to review all independently produced material on Tourette Syndrome, and TSA cannot endorse material which the TSA Medical Advisory Board has not reviewed.
When a Chapter provides information in its newsletter about independently produced TS material, or carries independently written articles by its own members or reprints of articles from other newsletters, the chapter newsletter must, by a statement similar to the following, indicate that TSA has not reviewed the material:“The TSA Medical Advisory Board has not reviewed this material. The author is solely responsible for its content."
C. Disclaimer Relating to Products or Services Advertised in Chapter Newsletters: Some chapters have carried paid advertising in their newsletters to help defray the cost of the newsletter or to support other chapter activities. When a chapter newsletter contains paid advertising, the newsletter must include:
-- the statement, “Paid Advertisement,” within the ad.
-- a chapter disclaimer such as the following:
“Advertisement in this newsletter does not constitute an endorsement by the chapter of the advertised service or product.”
2. REPRODUCTION OF MATERIAL FROM OTHER SOURCES IN CHAPTER NEWSLETTERS
Material from the TSA newsletter and The Chapter Connection may be reproduced in chapter newsletters, with attribution. Before reproducing material from any other source, including other TSA chapter newsletters, the chapter should obtain permission in writing from the source of the material and must attribute the source when the material is reproduced.
3. CHAPTER newsletter distribution of information about a contributor’s product or service
If a chapter receives outside financial support for its newsletter or other aspects of its program (as in Item 1C, above) and is asked by a financial supporter to distribute information about a product or service of the contributor, the financial support must be considered to be payment for the distribution of information (in effect, payment for advertising), and the TSA policy regarding advertising in chapter newsletters applies.
For Example, if the XYZ Pharmacy made a financial contribution to the chapter and asked the chapter to include a flyer describing an XYZ discount prescription service for TS medications in a chapter newsletter the flyer must be marked "Paid Advertisement," and the advertising disclaimer must be included in the newsletter.
4. CHAPTER NEWSLETTER ACKNOWLEDGMENT OF SUPPORT
If a chapter receives outside support to produce its newsletter or to provide other chapter material or service, that support may be acknowledged by a statement such as:
“The (Name of TSA Chapter) gratefully acknowledges the contribution of printing services by the XYZ Corporation in the publication of this newsletter."
5. ASSOCIATION OF PROFESSIONAL OR BUSINESS ACTIVITIES OF PRESENT OR FORMER BOARD MEMBERS WITH THE ACTIVITIES OF THE CHAPTER
Many professional and business people contribute their services to TSA chapters through participation on chapter Boards of Directors and in other ways. Such community support is encouraged by TSA.
However, TSA and affiliated chapters operate under Section 501(c) (3) of the IRS Code, which covers not-for profit organizations. It is inappropriate for professional or business people to use their association with TSA in advertising their personal, for-profit services or products. Chapter newsletter editors must take care that the copy of paid advertisements by present or former participants in chapter activities not refer to the advertiser's association with TSA. Such a reference tends to imply endorsement by the chapter, despite a disclaimer.
6. postal regulations concerning advertising in material mailed under non-profit bulk-mailing permits
Postal regulations place some restrictions on both the type of product or service which may be advertised in publications which are mailed under non-profit bulk-mailing permits and the content of the heading of those publications that do carry advertising.
TSA will attempt to keep abreast of postal regulations concerning material mailed under non-profit bulk-mailing permits and to advise chapters of these postal policies through The Chapter Connection. Chapters also should be in contact regularly with their local post offices to keep up-to-date on relevant postal regulations. In addition, before including advertising in a TSA chapter newsletter, the chapter must contact the Director of Chapter Services to determine whether the content of the proposed advertisement and other aspects of its presentation in the newsletter comply with current postal regulations.
5. TSA POLICIES CONCERNING ISSUES ASSOCIATED WITH JOINT ACTIVITIES OF TSA CHAPTERS AND NON-TSA-RELATED TOURETTE SYNDROME ORGANIZATIONS
1.Members of any TSA Board of Directors (national TSA or chapter), TSA support group steering committee, or staff members of any TSA chapter, who also serve on the board of directors of a non-TSA-related Tourette Syndrome organization, must, together, total one less than the number required for taking action by the board of the non-TSA-related Tourette Syndrome organization after a quorum has been established.
2. Board meetings of TSA chapters and other governing or administrative activities of a TSA chapter may not be held in conjunction with board meetings or other non-TSA- related governing or administrative activities of any other Tourette Syndrome organization.
3. To assure appropriate independence, before sharing chapter facilities, equipment, material, publications, or other assets with a non-TSA-related Tourette Syndrome organization, TSA chapters will obtain written permission from national TSA.
4. Names, addresses, phone numbers and demographic information belonging to the TSA chapter may not be divulged to or used by any non-TSA-related organization.
5. TSA chapter newsletters may be used to announce meetings and other activities of other organizations. Coverage of the activities of non-TSA-related organizations, beyond routine, brief notices, must be avoided or treated as advertisements, with an appropriate charge.
The newsletter of any TSA chapter whose activities might be confused with those of a non-TSA- related Tourette Syndrome organization must carry a disclaimer similar to the following."The Tourette Syndrome Association -- XYZ Chapter is separate from and is not related to the organization known as the ABC Tourette Syndrome Forum. TSA does not endorse or promote the activities of the XYZ organization but merely presents the following for your information."
Where TSA information is to be disseminated through the newsletter or other written materials of a non-TSA organization it should be done in a way that makes it clear that TSA is a separate and distinct organization from the non-TSA related organization.
6. All expenses for fundraisers jointly held by a TSA chapter and any other organization(s) must be split equitably among the participating organizations.
All advertisements and literature concerning fundraisers held jointly by a TSA chapter and any other organization(s) must specify clearly the percentage of net proceeds which will be received by each organization.
The terms of distribution of expense and of net proceeds must be specified in a written agreement between the TSA chapter and the other organization(s) and reviewed by the TSA Director of Chapter Services prior to initiation of the joint fundraiser. In addition to assuring full understanding by TSA supporters of the terms of the fund raiser, this provision allows the Director of Chapter Services and the chapter to work out flexible arrangements in accordance with the needs and wishes of individual chapters in special circumstances.
7. TSA volunteer chapter leadership is free to participate in any other activities they choose. However, it is the practice of TSA Director of Chapter Services regularly to consult with chapter leadership about the effectiveness of the chapter organization. If, during this consultation, the TSA Director of Chapter Services and/or the chapter leaders not associated with the non-TSA-related Tourette Syndrome organization should determine that some chapter leaders are no longer effectively representing TSA the chapter will be encouraged to make appropriate leadership changes.
Adopted by the TSA Board of Directors 11/16/97
6. GUIDELINES FOR RECRUITING, SELECTING, AND RETAINING EFFECTIVE SUPPORT GROUP LEADERS
The following Guidelines are presented to assist Chapters in developing effective local Support Groups. Developing a Chapter Support Group involves a two-way interaction: the chapter must wisely choose able support group leaders who can take initiative, and it must also stand ready to offer encouragement and assistance to the Group leader so that he/she will not feel alone in the endeavor.
The chapter will need to help Support Group leaders learn to share the tasks of Support Group activities through delegation or rotating of duties. In some cases, sharing the tasks of the Group by choosing co-Support Group leaders may make the task more rewarding for everyone.
Tasks of the Support Group Leader:
Study the TSA Support Group Manual to learn about support group organization and TSA support group policy.
Making arrangements for meetings at little or no cost
Referring callers to appropriate community resources.
Helping members learn about TSA and other resources.
Writing news releases for local media announcing meeting date/place.
Submitting support group news to be included in Chapter newsletter.
Ways to Identify a Potential Leader:
Questions to Aid in the Assessment of the Critical Success Factors for Candidates:
Desire:
Has the candidate requested the job? Is the candidate an active volunteer for TSA?Motivation:
Does the candidate have TS personally, or
Is the candidate a parent or close relative of someone with TS?Availability:
Does the candidate have the time and resources?
Are there any other impediments that would interfere?Knowledge:
Is the candidate a member of TSA?
Familiar with the available literature?
Able to converse intelligently about TS?Sensitivity:
Sensitivity is probably best judged by personal interviews with prospective candidates or by references from those who know the candidates personally -- obviously very subjective.Leadership ability:
Has the candidate taken a leadership role in TSA or any other volunteer organization?
Has leadership ability been demonstrated in any other areas of professional or personal life?Experience:
Has the candidate ever been a successful support group leader for TSA or had similar experience in another organization?
Had counseling experience?
Is a health/medical/educational professional?
Can provide references relating to experience and leadership ability?
Ways to Assist a Potential Leader:
Team-up new volunteers with another support group and/or encourage them to attend one or more support group meetings for guidance.
Have a chapter coordinator of support groups to help motivate new support group leaders, assist in the organization and management of the group and provide ongoing counsel and advice.
Encourage team-playing between the support group and the chapter to avoid future difficulties.
Recognize their good work. Don’t forget them or take them for granted.
Make them feel welcome. Invite them to participate in other activities.
Elevate them to position as Board Member or Chair of another event.
Ask them to contribute an article for the support group column of the Chapter Newsletter.
Conduct an annual retreat of support group leaders to discuss support group concerns and serve as a “support group for support group leaders.”
Assist support groups to help develop individualized support group mission statements and plans, to review with the chapter to assure compatible objectives.
Say “thank you” often, sincerely, and in different ways.
Don’t overload support group leaders with demands. Watch for burnout. Be sure they don’t try to do too much at any one time.
Provide support group leaders with someone they can “unload” on in a positive manner as needed.
Let them know how they were selected and why so they will be able to help recruit other support group leaders.
Don’t expect them to stay forever. Encourage them to help recruit their replacements!
7. GUIDELINES FOR TSA CHAPTER FUND RAISING ACTIVITIES
1. JOINT TSA/CHAPTER FUND RAISING ACTIVITIES
The Association and chapters engage in several joint activities that, although directed by the Association, provide funds for both.
A. The Unified Dues Program.
The Association and the chartered chapters are a unified organization. A single payment of dues entitles an individual to membership in both the national Association and the chartered chapter in his/her area of residence.
The Association will mail an initial dues-notice letter in early January, with a follow-up in early March. This timing allows a report to the chapters by late April or early May of the names of individuals within the chapter who have and who have not paid dues. Chapters are then asked to send an immediate follow-up letter to individuals from the chapter area who have not paid dues. Through this joint effort a substantial portion of a chapter's dues money can be remitted by June. A second dues payment will be made to chapters in the fall.
B. The Combined Federal Campaign.
The Association is the national not-for-profit agency which is certified to participate in the Combined Federal Campaign for funds for Tourette Syndrome. As such, TSA is a member of the National Voluntary Health Agencies, a consortium of health-related organizations.
TSA chapters that participate in the Combined Federal Campaign do so under the certification of the national Tourette Syndrome Association.
The Association will handle all paper work necessary to comply with CFC requirements within the chapter area. The chapter may be requested to provide local representation in support of TSA participation in the Combined Federal Campaign.
All Combined Federal Campaign funds will be forwarded in their entirety to the Association. Using the amount of CFC funds received in the chapter's geographic area in FY 1989-90 as the base for calculations, CFC funds received in excess of that amount in 1990-91 and thereafter will be split 50-50 between the chapter and the Association.
A separate listing by a TSA chapter within a state CFC campaign is permissible only with the written consent of TSA.
2. SEPARATE CHAPTER FUND RAISING ACTIVITIES
A. Timing:
Most Association and chapter fund raising activities differ sufficiently in kind and in the clientele to which they are addressed, that there is not likely to be substantial conflict. Nevertheless, it is wise for chapters and the Association to avoid scheduling similar fund raising efforts at the same time. At present the major Association fund raising activities -- Jaguar raffle, dinner dance and journal, and research fund appeal -- are all held in the fall, October through December.
B. Meeting State and Local Fund Raising Requirements:
Chapters must learn and abide by state and local regulations governing the fund raising activities and financial reporting of not-for-profit organizations. These may include:
C. Regular Consultation with the Director of Chapter Services.
To minimize risk and to coordinate activities, chapters will consult with the Director of Chapter Services when planning any fund raising event.
Chapters will keep the Director of Chapter Services informed of fund raising plans and results through newsletters, meeting minutes, or special reports.
D. Considerations of Risk and Liability.
(1) Insurance
The chapter is responsible for carrying appropriate liability insurance to cover risks associated with chapter fund raising events. Chapters should contact the Director of Chapter Services about the possibility of obtaining single-event insurance at cost through a rider on the national TSA insurance policy.
(2) High-risk and Dangerous Activities
If the chapter engages in high-risk fund raising activities that involve physical exertion or that might be hazardous, it should require each participant to sign a waiver of liability. Examples of such activity might be:
Chapters are prohibited from fund raising activities that are so dangerous as to be self-evidently imprudent. Examples might be:
E. Ethical and Legal Considerations.
(1)Content of Fund Raising Appeals.
It is important that the content of fund raising appeals be specific and accurate as to the uses to which the funds will be put. For example, chapter letters requesting donations or support for fund raising events to meet operating expenses should not state or imply that funds will be used for "TS research."
(2) Professional Fund Raisers.
Association rules prohibit chapters from using the services of a professional fund raiser who will receive a commission or a percentage of the receipts as compensation.
(3) IRS Regulations.
TSA's federal tax-exempt status under section 501(c)3 of the Internal Revenue Code requires that no part of TSA's or a chapter's net earnings inure to the benefit of a private individual.
(4) Conflict of Interest.
Chapter volunteers must scrupulously avoid using their activities with the chapter to benefit their private professional practices or business activities.
3. CHAPTER FUND RAISING CONSULTATION
Chapters are encouraged to seek funding for various chapter and Association programs. Through the Association's Coordinator of Development chapters can obtain guidance on ways to obtain funds, including grant applications, special events, and promotions. Before carrying out any fund raising activity, chapters need to consult with the Association's Coordinator of Development.
07/91
8. TSA GUIDELINES ON CHAPTER-PRODUCED BROCHURES, ARTICLES, TRAINING MANUALS AND OTHER WRITTEN MATERIAL, AND VIDEO AND ELECTRONIC COMMUNICATIONS
PROVISIONS DEALING WITH CHAPTER WEBSITES
TSA Chapters that maintain websites or other electronic means of communication will be diligent that the information which is presented on the site is accurate and up-dated frequently to assure that it is current.
Each TSA chapter web-site or other site of electronic communication must carry a disclaimer to avoid liability for misinterpretation or misuse of the material presented on the site. Following is the disclaimer which has been approved by the TSA attorney, and which national TSA uses. Chapters are expected to substitute the Chapter name for national TSA’s name and use this disclaimer on the Chapter web-site.
Excerpts from brochures or other educational materials produced by the national Tourette Syndrome Association may be presented on the website, with attribution.
The presentation of the TSA Physicians Referral List or lists of the names of other private professional practitioners could be interpreted as advertising or as promoting one professional over another. It is TSA policy that the Physicians Referral Lists and the names of other professional practitioners not be posted on chapter websites.
Message board, chat rooms or similar vehicles for exchange of information, questions or opinions by individuals must not be posted under the chapter name or on the chapter web-site. Chapter members, or the parents of children with TS,who would like to engage in such exchanges must provide web facilities that are unrelated to the chapter and that do not carry any indication of a relationship to the TSA chapter
January 26, 2002
as modified 03/07
The Tourette Syndrome Association, Inc. (“TSA”) Web Site (http://www.tsa-usa.org/) (“Web Site”) is an educational and informational service provided by TSA, with the express condition that users agree to the terms set forth in this User Agreement, as they may be modified from time to time. Your consultation and use of this Web Site constitutes your acknowledgment and acceptance of this User Agreement.
Medical Disclaimer, Disclaimer of Warranties and Limitation of Liability
You acknowledge that the information on this Web Site is provided "as is" for general information only. Individuals should not rely on the information posted on this Web Site as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. TSA strongly recommends that care and treatment decisions related to Tourette Syndrome and any other medical condition be made in consultation with a patient's physician or other qualified health care professionals who are familiar with the individual's specific health situation.
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9. GUIDELINES FOR CHAPTER PROFESSIONAL ADVISORY COMMITTEE(S)
PURPOSE OF ADVISORY COMMITTEE(S):
-- To advise chapter leaders and community professionals in the Advisory Committee members' areas of expertise relating to Tourette Syndrome. Committee members will be available to consult with professionals who may have questions regarding appropriate treatment and primary care of people with TS, as well as questions concerning educational and other professional matters related to TS.
-- To participate in establishing the chapter's goals and objectives and in planning its programs. Advisory Committee members will be asked to contribute their expertise and perspective in developing the chapter program.
MEMBERSHIP OF ADVISORY COMMITTEE(S):
-- Advisors should represent a cross section of professional disciplines concerned with TS (medicine, education, social work, etc.) with the composition of the Committee based on the chapter's needs.
-- A chapter may choose to appoint a single Advisory Committee encompassing the diverse disciplines concerned with TS, or may choose to appoint several separate advisory committees representing different disciplines (i.e. medicine; education).
-- Medical doctors on an Advisory Committee will be listed on the TSA Physicians Referral List.
-- Advisory Committee(s) should be large enough (five to eight) to allow regular rotation of members who are appointed to the Committee for a limited, specified term of service.
CHAPTER EXPECTATIONS OF ADVISORY COMMITTEE MEMBERS:
-- Advisory Committee members should expect to attend at least one Committee meeting a year.
-- As a Committee develops, members may choose to meet more frequently. Ideally its members will become a cohesive group, viewing itself as the core treatment community and consulting with each other on an as needed basis.
-- If the chapter chooses to have separate advisory bodies representing separate disciplines, it is important to develop communication lines between the advisory groups for coordinated assistance to people with TS.
-- Speak occasionally to chapter membership meetings.
-- Advise the chapter Board of Directors and Executive Director on appropriate matters.
-- Refer patients and other professionals to TSA.
-- Use and distribute TSA materials to patients and other professionals.
-- Become a member of TSA at the appropriate level.
ORGANIZATIONAL STRUCTURE:
-- The chapter Board of Directors specifies the number of members of an Advisory Committee
and the terms of office, and appoints members to the Committee.
-- In setting up chapter Advisory Committee(s), the chapter is urged to seek the counsel of the TSA Director of Chapter Services.
-- The Advisory Committee appoints its own chair from among its members.
-- The chapter Board of Directors appoints a liaison to work with the Advisory Committee (e.g. one of its members or the chapter Executive Director).
-- The Chapter letterhead should list Advisory Committee members. This will make for recognition of the chapter in the professional communities and will acknowledge the volunteer contribution of Committee members.
RELATED TSA POLICY
-- The TSA Medical Advisory Board is the body which is authorized to make additions or other changes to the TSA Physicians Referral Lists. The chapter will work through the TSA Liaison of Medical and Scientific Affairs if it seeks to add physicians to the Physicians Referral List for its area.
-- Any publication or other material which the chapter wishes to produce and distribute in the chapter's name must be reviewed and approved by the TSA Medical Advisory Board.
Adopted 1/94
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1. All references in this document to TSA, Inc. (the Association) also cover TSA chapters, support groups and any other organization formally affiliated with TSA, Inc.
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999