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In February of 2000, Kathryn A. Taubert, who was a member of the Board of Directors of the Tourette Syndrome
Association at that time, submitted the results of an unofficial online survey to the National Tourette Syndrome Association (TSA), in the hopes that the process of canvassing TSA's constituents
would become a more significant part of regular TSA operations.
The results and recommendations of Survey2000 are contained in a report which is available
here.
The complete report is a 33-page document in the Portable Document Format (.pdf), which can be viewed with a reader such as the free Adobe Acrobat reader. If you do not have this reader installed on your computer, you can click
here to download it for free. Once you have downloaded it, or if you already have a reader installed, then you can access and print out :
COMPLETE SURVEY2000 REPORT WITH ATTACHED APPENDICES.
Here are a few highlights and snips from Kathryn's extensive document, just to give you a flavor of what the document covers and to encourage you to access and print out the entire document for perusal:
TABLE OF CONTENTS
Overview and Objectives
Profile of Survey Respondents
KEY ISSUES
It is important to remember, when interpreting surveys of this nature, that PERCEPTION is more important than accuracy. The issue isn't how 'right' or 'wrong' respondents are, but how well TSA is meeting their needs as they perceive them, educating them about mission and goals, and creating expectations accordingly.
I. Survey respondents believe the Tourette Syndrome Association, Inc., does the following well:
- raise funds for research
- conduct national Conferences
- inform the public about TS
- produce the national Newsletter
II. The category of 'customer' best served by TSA are newly diagnosed parents of young children, and others just learning about Tourette Syndrome.
III. The categories of customer least served by TSA are:
- adults with TS, with or without comorbid conditions
- parents of children with "milder" symptoms
- people requiring more than "basic education" and referral
IV. Chapter volunteers and TSA non-volunteer members indicated a number of areas for potential improvement in national/chapter relations, operations, communications
strategies, program development and fundraising.
V. The greatest current needs, as perceived by respondents in all categories, include:
- daily strategies for living with TS and/or someone with TS
- help with schools, workplace/housing issues, legal, medical, societal, and prejudice issues
Specific Comments
Members, Chapters Volunteers, and Others
Specific Survey Recommendations
Recommended Next Steps:
1. Video for Adolescents, Adults
2. Brochures Relating to More "Typical" Constituent
3. TSA's Web Site
4. Update Videos and Brochures
5. Surveying the Membership
6. Training of TSA's Client-Interface Staff
7. Developing Methods for Constituent Input
8. Identifying Target Markets and Networking
9. Nationwide Marketing Campaign
10. Foster Research on Social/Psychosocial and Coping Mechanisms
11. Assessing TSA Staff and Leadership Effectiveness and Performance
SUMMARY AND CONCLUSIONS
Fifty-two people representing all ages, diagnostic criteria, categories of volunteer, non-volunteer members, and non-members responded to an on-line Survey to
determine what TSA does well and where it might improve.
TSA's perceived strengths are its ability to fund research, conduct conferences, inform the general public about Tourette Syndrome, and produce a national Newsletter.
The group most likely to benefit from TSA's efforts are families of newly diagnosed children.
Groups least likely to benefit are adults with TS, families of children with milder symptoms, and those who require more than basic information and referral.
Survey results suggest dissatisfaction by chapters with how TSA currently meets their needs.
Respondents indicated the need for more and better quality communications with national, more training in managing chapter operations, raising funds, getting help for members, and planning events with a minimum of available resources.
Eleven specific recommendations were presented, based upon survey results, some of which are already on the TSA operational tableau. Differences in priorities between current plans and constituent needs were discerned, however, in some survey results.
The constellation of TSA customers has grown substantially. Expectations are that TSA should be able to meet the needs of all of them. TSA should re-visit mission and goals, against the tableau of customer needs, and revisit strategic/operational plans with an eye toward re-prioritization of efforts and resources to those groups most in need and most likely to benefit.
Specific recommendations include:
- develop new materials and revising existing ones,
- provide additional services for groups currently underserved,
- improve communications and operations strategies between national and chapters,
- update the TSA website, and increase the use of Internet technology for education, advocacy, fundraising, general communications, and customer feedback,
- implement regular and frequent feedback to maintain currency with customer needs,
- market benefits of association with TSA more aggressively to first time callers and the general public,
- construct opportunities for TSA leadership (both staff and national BOD), to interact frequently and routinely with constituents to create greater unity and understanding between leaders and
constituents,
- implement annual goals and objectives for staff and the national BOD, with ways to measure success and identify areas for improvement.
Survey Form APPENDIX A
Raw Data File APPENDIX B
Back to Tourette Syndrome - Now What?
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome Tourette
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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