Field Views from Tourette Syndrome Association

A person in need (of services, support, assistance)
A person who can provide (volunteerism, funds, in-kind services)
A person who can recommend (your chapters to others in need, or others who can provide)

We all know the types of Websites that draw people in. They are:

Professional looking
Updated
Visually appealing
Informative
Interactive

When we get to a Website, the last thing we want to do is hunt around for the information we need. When that happens, we leave feeling frustrated!

All of this also holds true when it comes to a TSA chapter's Website. If you have not evaluated your own chapter's Website in a while, take a close look at it and ask yourself:

Does the home page engage me to further explore the Website?
Are there navigational buttons that clearly identify the sub-pages?
Are there buttons for:
- About Us
- Upcoming Events
- News & Resources
- Support
- Volunteer Opportunities
- Donate
- Contact
Is the program, event, or news information provided current?
Do the program and events provide ALL the information, including costs, how to register, dates, times, and locations?

If you can answer NO to more than one of these questions, then your Website should be updated.

With the amount of time chapter leaders already put into their volunteer work, it's easy for the Website to get overlooked or put off for tomorrow. However, you may be losing an opportunity to engage the people who are looking at your site TODAY.

Courtesy of contributions from TSA-Illinois and TSA-Texas, here are some Best Practices tips to help get your chapter's Website looking great, staying current, and providing the information and resources that are needed by the people we serve:

Make your Website a Board priority! Chapter Officers and Board Members need to realize the significance and potential of a quality and up-to-date Website.

A good Website should be easy to read and navigate. If you want people to take advantage of your Website, it needs to be easy to read and not overwhelming or intimidating.

Take down the old information. If your Website still lists events that are in the past as "upcoming", it is time to take them down. Better yet - move it to a "news" or "update" section where you can show how well the event went! Show pictures, give numbers on attendance or money raised, and encourage people to save the date for next year.

Update the content of the Website regularly or you will lose regular readers. Your Website needs to be a source of new information for your membership and the community in order to be the best local resource for TS and TS events. Content can be kept fresh by:

Checking local and national resources for recent TS related events or articles
Having volunteers and support group leaders submit dates for meetings and other events
Publishing important information that we receive regularly from National TSA
Taking pictures at events and publishing them on your Website (make sure to get permission from the families) - in general, people love seeing their kids on the web site

Good Websites are important because, if used properly, they allow you to reach the most people with the most information, potentially at the least cost. There is a direct correlation between Website use and increased donations, attendance at events and people contacting your office for services. Though it may seem like maintaining a Website is time consuming, it ultimately saves time and often money. In many cases, by making an update on the Website, you don't have to do a mass e-mail or use regular mail.

Find the right server. It is important to have a host server that allows for easy accessibility, and has enough space that will allow you to have the appropriate amount of pages, images, and capabilities that you need.

Have the right webmaster(s)/mistress(s). The Chapter should assign two or three people at the most to handle the duties of maintaining the Website. At least one of the people assigned should always be a Chapter leader (Pres., Exec. Dir.). With a team of two or three, there is a back-up in place, eliminating the risk of not getting the site updated if someone can no longer fulfill their duties. Once you get the hang of it, most Website changes can be made remotely and rather quickly depending on what type of Website designer you are using.

Note: If your current webmaster is unavailable to make regular updates, it is time to find a replacement. Thank them for their time of service, and assure them that they can still be part of the process when it comes to developing web content, but it is necessary to hand over the day-to-day responsibilities to someone else. Be sure the former webmaster no longer has passwords or access to make changes.

Get your Website out there! You've put in lot of work to build and maintain the Website, but it is of no help if people don't know it's there. There are many small ways to do this:

After an in-service, direct participants to the Website for chapter info and materials
When speaking to newspaper reporters, always make sure they promise to put your web address in the article
Have school and social service organizations link your Website to theirs

________________________________________________________________________

Chapter Website Redesign: TSA-MA Success Story

by Dawn Erickson, TSA-MA Chapter Chair

TSA-MA Chapter recently re-launched their Website, which looks fresh, is easy to use, and provides a lot of information. We asked Dawn to share with us the chapter's experience in this lengthy, but worthwhile process.

When was the original chapter Website launched?
It was launched in 1996.

The new site was launched in August of 2008. We sent out a press release announcing the new site with information and a link to the new site.

How it was structured?
The original Website was designed as one page, with some updated events on the front page. There were also multiple links for other Websites related to TS.

The new Website was designed similar to the New Jersey Website (which we loved) and created to be interesting, eye catching, warm, and very user-friendly with loads of links and resources.

We also set up new email addresses for board members to give our organization a polished look. Emails such as:

info@tsa-ma.org
derickson@tsa-ma.org
events@tsa-ma.org
volunteer@tsa-ma.org

The need for change - how did it come about?
At the time of conception, the original Website was one of the first Websites created nationally for a TSA chapter. It was a great site at the time, and did have lots of great links. Over time, the Website stayed the same as more updated and user friendly sites were created in the last decade. The one and only volunteer who had the only access to this site was at times a challenge to reach. We realized that not only did we need a new format, we also needed a couple of active volunteers to maintain it.

A redesign was needed so we could use the power of the Internet to reach more folks and offer more resources. And only key volunteers would have the access to make updates to the site.

Who designed your Website?
The new site was designed by a graphic designer. I had a vision and she created the template, which we revised and fine-tuned as we went along. I like warm, fuzzy and lots of pictures to make it personal.

Who contributed to the decision-making as to the content and tools of the new site?
The idea to create a new Website was spearheaded by me. It was approved by the board of directors and all board members and then reviewed by them each step of the way. As we created the first prototype, images were sent along for comments and suggestions. Content was discussed and fine-tuned mostly through on-line correspondence.

What were the challenges with getting the Website up and running?
There were several challenges to this project.

First, it was a very time-consuming and labor intensive project. We started off very enthusiastic and organized, including establishing three committees to divide the workload (Technical Committee, Design Committee, and Content Committee) based on interest or experience. Despite the best intentions of our initial crew of 15 volunteers, participation waned to a group of 5, then a crew of two plus graphic designer.

Second, the project was also a bit overwhelming for someone new to Website design. We absolutely needed the help of a graphic designer, and without this incredible person who put the site together and led us through each step, we would NEVER have been able to accomplish this endeavor. During this process, we had to gather the information we wanted put on the site, organize it, categorize it, and then write all the descriptions and comments. Lots and lots of writing. Lots and lots of research. Lots and lots of editing.

Lastly, it was hard for the previous Website "torch-holder" to let go. We had a few issues with this transition as we neared the launch deadline. It's a good idea to have more than one person in charge of the Website once it's launched and have the board oversee it.

What you are able to now do with your new Website?
Since the launch, we have been able to meet more families (online) affected by TS. We have had an incredible amount of positive feedback about the new site. We are able to have this site be a focal point to direct people to various resources. And we are extremely excited about using it in the near future to host some webinars. (I love the one New Jersey just held - and at our upcoming board meeting we will be addressing this as a future project.) Many of our members attended their webinar - so we are excited to create our own someday.

How often is the new Website updated?
Our goal is to update the site once a month - and occasionally sooner if a time sensitive event comes our way. We have already gone on the site and updated some timely items.

How much did it cost?
We paid our designer $500. The only other costs incurred were the Website name and domain. Server cost with GoDaddy was $3.65 monthly (so we got the 36 month package) and the domain names were very minor costs, purchased through Network Solutions.

The cost for the graphic designer was well worth it - she did all the inputting of information, downloading of pictures, and organization of site as well as tons of changes from us. She was very inexpensive for the time she committed. This project was approximately a year's worth of time to complete. She gave us a great deal because she does a lot of pro-bono work for non-profits. But I needed to really work her - with lots of meetings and many, many edits and design changes - so I wanted to hire her so I could have the ability to control the look of the Website without feeling guilty for working her too hard. She was still a steal.

I would recommend that any chapter who will embark on a new Website design to budget in a hire for a designer - pro bono is hard to keep committed and hard to be demanding with. The final product is well worth the investment!

________________________________________________________________________

TSA's Multi-Cultural Outreach

A universal challenge faced by chapters and national is reaching those who are underserved. Tourette Syndrome can be isolating enough, even without geographic or cultural barriers.

Field Services is re-launching its efforts to provide the services and information that are needed in diverse populations nationwide. Field Services Manager Jill Zarensky will be taking the lead by establishing a small group within TSA's staff to determine who our best resources are that would bring the most insight for priority needs and access to the various targeted communities.

The outreach program will also work closely with TSA's partnership with the Centers for Disease Control (CDC), which has similar goals and will continue to pursue objectives to translate more TSA publications to other languages, and develop new publications that are relevant to diverse populations. The CDC program will also partner with other multi-cultural organizations to gain access to those populations by way of exhibiting at association meetings, and giving medical presentations to association members. The department is very much looking forward to renewed outreach activities.

We have heard from many chapters who are in need of educational tools and resources so that they may provide better outreach to minority and/or underserved communities. We would greatly appreciate your assistance with this by:

providing us with details on the most underserved communities in your chapter area, and
providing us with the names of contacts in those communities so that we can seek their experience and guidance, which would ensure that we are developing strategies and materials that best speak to those communities.

We look forward to working with chapters in developing educational materials and programs that help us all bridge the gaps. Please contact Jill by e-mail or call her at 718-224-2999, ext. 258 with any information.

________________________________________________________________________________

Keep Us Informed About Upcoming Events!

We in the Field Services Department are so pleased to receive copies of chapter newsletters and notices of special events. There are two main reasons why it is important to keep the national office "in the loop" ---

First, TSA carries substantial liability and directors and officers insurance policies for all chapter volunteers nationwide. We need to let the insurance company know in advance whenever any special event takes place, but especially whenever the general public is invited, any food or services are provided, donations are being solicited, or a fee is being charged. We can all rest assured that your coverage is intact knowing we've given notice about an event to our insurance people in advance.

The other reason is that Field Services is always interested in hearing about new and interesting events, including novel ways of helping build awareness about Tourette Syndrome, new fundraising ideas, and special achievements, so that you can share the news with other chapters through venues like the TSA national newsletter, the TSA Annual Report, and of course, Field Views!

________________________________________________________________________________

TSA Membership Recruitment Program

Your chapter's ongoing efforts to increase the number of TSA members among those you serve does much more than confirm those members' interest in and commitment to the Tourette Syndrome Association. It helps us build awareness, have a stronger voice in Washington, and further critical research. By increasing your chapter's membership, it shows that you are connecting with more and more individuals and families, who, in turn, continue to support the chapter and its services and activities. And that helps us all.

So, as an incentive, TSA is once again offering the opportunity for chapters to become a participant in the Membership Recruitment Program. Now you can turn the process of recruiting TSA members into a fundraising opportunity! Here's how it works:

Each chapter will be receiving a printed report listing the number of current paid individual and family members, excluding scholarship members, from the TSA database over the preceding six months as of August 31, 2008. This list will establish the base number of paid members currently credited to the chapter based on the zip codes established in the chapter agreements.
The number of current members in that report becomes the basis for calculating membership levels for the following year. Participating chapters will receive 100% of the $45 basic membership dues for every paid member over and above the base number. For example, if the base number is 50 paid chapter members as of August 31, 2008 and 60 paid members on August 31, 2009, the chapter would receive the standard 2/7 of the paid dues for the 50 members plus 100% of the 10 new paid members. That's $450 paid to the chapter in addition to the regular UDS payment for the other memberships. Sixty would then become the new base number for calculating future membership increases. If the following year the paid membership drops below the new base, the chapter would receive only the UDS amounts.

A chapter can sign on to this program by committing to activities that will grow the number of constituents who become TSA members. This can be as simple as calling non-members on your data base and asking them to consider joining or renewing their TSA membership.

Remind your prospective members that they will receive TSA's newsletters, public policy updates, and discounts on publications, as well as other membership benefits, including the satisfaction that they are among the thousands of people helping to build awareness about TS, providing education and support for families whose lives are affected by Tourette Syndrome and its associated disorders, and enabling the cutting edge research that is bringing about new insights into and treatments for this complex and mysterious disorder.

Chapters will soon be sent by E-mail a simple sign-up form and review of the program. The deadline to enroll will be January 1, 2009. Please contact Dan Rostan with questions about this program.

________________________________________________________________________________

TS Awareness Month - May 15-June 15, 2009

It's never too early to start planning for Awareness Month! Whether it's planning a family picnic or day of activities, a legislative breakfast at your state capitol, launching an awareness campaign, or having a Walk or other type of fundraising event, getting a jump on the spring planning is always helpful. The Fall 2008 issue of Inside TSA highlighted many chapters' awareness activities from this past spring. Please call Dan, Jill, or Sandra if you'd like to discuss ways to bring TS Awareness activities to your chapter.

________________________________________________________________________________

Chapter Leadership Training - Measuring Success

TSA has provided Chapter Leadership Training for nearly 10 years, and while we know the intangible benefits - such as being able to meet, interact, and build on the energy of sharing the TSA mission - there are also practical benefits that we hope attendees bring back to their chapter, resulting in tangible improvements.

We would like to hear from you about specific things that you have gotten out of Leadership Training that you were able to use to your benefit at home. Please let us know:

What specific skills or tools did you gain at Leadership, which you then put into practice back at your chapter? Please give examples, and describe how you used them to create a new, or grow an existing program, service, or event.
A big part of Leadership Training is information sharing. What resource (such as an invitation, newsletter template, or program idea) did you get from another chapter that you were able to take and use at your own chapter?

Your feedback is very important to us! Please e-mail Jill Zarensky with your response.

________________________________________________________________________________

"The Tyrannosaurus Tic" Book Release

The Tyrannosaurus Tic, a new book written by TSA-Greater Washington, DC Chapter Board Member Stephen McCall, has just been released! Written for all ages to read and enjoy, the story focuses on Michael, a 12-year-old boy and his on-set of tics before being diagnosed with Tourette Syndrome. This is the first book of The Tyrannosaurus Tic series, as it follows Michael as he experiences what is going on in his body. TSA President Judit Ungar says, "Stephen's first-hand accounts of a boy being diagnosed with Tourette Syndrome and his related struggles help provide insight and comfort to newly diagnosed children and families. He depicts his path to a diagnosis with compassion, humor and a narrative that leads to a better understanding of TS for all who read it. A delightful story for all ages!"

If you'd like to purchase a copy of The Tyrannosaurus Tic, go to "About Book" at www.tyrannotic.com.

_________________________________________________________________________________

Team TSA Marathon Events - Get Involved!

Recruiting runners for a Team TSA Marathon event is an easy way for chapters to raise money and awareness!

Contact Michelle Staley at 718-224-2999, ext. 256 or by email to learn more!

November 16, 2008 - San Antonio Marathon
December 14, 2008 - Honolulu Marathon
January 9-11, 2009 - Walt Disney World (FL) Marathon
January 18, 2009 - Chevron Houston Marathon
January 25, 2009 - ING Miami (FL) Marathon
February 1, 2009 - New Orleans Mardi Gras Marathon
February 12-15, 2009 - Myrtle Beach (SC) Marathon
March 21-22, 2009-Shamrock Marathon (VA Beach)

________________________________________________________________________________