Changes
Welcome 'moisture seeker'. Throughout this year we are making some big changes - better we hope. The new Sjogrens.org.au website is now maintained and hosted for free, all donated by Japetus. Jay, as he is known for short, is a local, north coast multimedia artist who has come on board to help Beverly restructure TASSA from the ground up. You can see his work here VisionaryJourneys.com. He is kindly donating his services to host, maintain and update the website and is helping to secure product samples and sponsorship for TASSA through 2009 and into the future. Jay has also introduced a new, easy to remember website address so that you can refer people easily without having to deal with the complex spelling of Sjögren's or remembering to add the .au. Now you can just tell people MoistureSeeker.com and that will go directly to the new TASSA website. Moisture Seeker is also the new name for our newsletter and the current access code for the member’s area (see below).

One of the primary targets of reform is lightening the workload for Beverly, who is still rehabilitating after serious Sjögren's neuropathy and has other complications like chronic Arthritis. Bev has neither the energy nor the finances to expend on running TASSA so there are some simple changes we have made in a number of areas to help lift that load on her as of the 2009 New Year and simplify her tasks. You can now view her story on the new Video page.

Website
There have been a lot of changes made and, wherever possible, systems have been simplified and streamlined for Beverly's benefit. We now have a standard membership password for all members that is issued when you join, renew or request it. This will be an easy to remember combination that will be updated each year with your subscription renewal.

The new site is not necessarily as sophisticated as the previous one but it is also much more accessible and easier to run for all sorts of technical reasons. All of it can now grow and move forward into 2009 and beyond with lots of new plans and updates still to be implemented, as you will see below.

There is now:
- a Navigation menu top and bottom of each page;
- a new Audio page with a Flash Player that has an interview with Beverly and some relaxing music by Japetus;
- a Video page with Bev's story that is now on YouTube plus a number of other stories about treatments and medications. Over the next few months we will be filming and releasing a series of 12 x 10 minute modules where Bev addresses all the different aspects of Sjögren's;
- the Shop can now be updated easily and all prices are inclusive of shipping and tax;
- more contacts on the Links page and more to come;
- on the Join page there is a new comprehensive sign-up form where members can supply Bev with a more detailed history so she can better evaluate what each member may need and a pro rata payment/donation panel. We encourage existing paid-up members to complete and submit the sign-up form so that we can gain a fresh overview of your condition;
- the Member's Area that now has a simple login that is changed once a year and gives access to a widening range of information and support.

Coming soon:
- a Donations page showing all members who donate or bequeath plus any businesses who sponsor TASSA with money, products and services;
- a Forum where all members can interact and discuss their situation, help each other and feel less isolated;
- online Video Conferencing for individual and group support;
- 12 Video Modules that will take members through all the different aspects of dealing with Sjögren's and addressing solutions;
- a Press Pack that is a ‘one click stop’ for media to download all the info about TASSA which is useful for members so they can direct anyone to find more information;
- a Testimonials page where members let TASSA know how TASSA has helped them deal with the condition;
- a Your Story page where members can send TASSA their stories for publication in the members area (or in the public area by permission) so that other members can develop a perspective on Sjögren's in general, and empathy with other members so you don’t feel alone plus also learn new ways already tried by fellow sufferers;
- a complete back-list of all newsletters and updated fact sheets.

Note: Beverly's new email address is - bevnorton@sjogrens.org.au

Newsletters
To start with, all newsletters will now be sent out only via email as well as being available on the website. No more paper or postage. In this day and age, when 'dial-up internet' is often included for free as part of a telephone account, it is very easy for members to utilise the internet for a whole range of contacts. Aside from TASSA newsletters, when you are online you can access the growing body of information on the TASSA website, research ways of helping your own individual symptoms, pay your bills using online banking to save energy and money going to the shops, network with friends and fellow sufferers, entertain yourself and generally stay in touch with the world.

Even if you are unable to have your own internet connection there are many ways to take advantage of the 'World Wide Web'. If you do not wish to have your own computer then you may have a family member or neighbour who can receive emails on your behalf and print them or just use their computer to access the internet. There are also public libraries and internet cafes where you can check your email or the website and print out any parts of the newsletter that are of interest to you. All newsletters (old and new) will also be on the website in the new members area.

As part of the newsletter process we are delighted that Sjögren's in the US are now sending us 'The Moisture Seekers' monthly newsletter in an electronic PDF file which means no more re-typing for TASSA, plus the information will be available instantly rather than waiting for months to arrive by conventional post. All of this helps TASSA be more efficient and so we can pass those savings onto you by reducing our fees. It is imperative that you keep TASSA informed of any changes to your email address. The onus is now on the members to manage their subscriptions and contacts.

Sponsors
Another way of reducing the load on Beverly and help TASSA members is by finding corporate sponsors. By attracting sponsors TASSA can further lower fees and increase our profile and thus attract and help more members in need. Sjögren's sufferers are usually physically and financially disabled to some degree so the lower the fees the more people we can help. Sponsorship will also help Beverly develop communications networks for support groups by phone and internet with the goal in 2009 to introduce live, online video conferencing to run national support networks.

Members
The new Member's Area will be kept much more up to date now with more old newsletters being uploaded as time allows, more Fact Sheets, details on special free product samples just for members, information about a range of products to support Sjögren's and much more.

Shop
More and more supportive products that can be purchased through TASSA will start appearing in the Shop as they come to hand. These will include support products but also supplements and medications available directly from TASSA. There is already the introduction of the new relaxing Visions of Byron nature DVD postcard and music by Japetus.

Medicines
We are in touch with a range of suppliers and even looking at importing certain products that are not available in Australia for exclusive purchase by our members. Some suppliers can even donate medicines for free fully subsidised by Map International – A Christian organisation who provide medicines to charities and the underprivileged around the world. This requires evaluation on a case-by-case basis but we hope to help disadvantaged members to obtain products like Lacricerts – for free!

Payments
The new Join Us page has a number of new features. Firstly, we have changed our fee structure. It now costs just $10 to sign-up plus $2 per month on a pro rata basis for the newsletter subscription for everyone. Existing members will just pay the $24/yr subscription fee unless they let their payments lapse. Secondly, from now on all renewals for all members will be due on the same day - June 1st. This means that Beverly does not have to be chasing subscriptions all year round and just has to focus on that task for a few weeks, around the end of the financial year. So renewals and new members will now be processed on a pro rata basis up to the end of May and due in the first week of June. Members who do not renew by the 30th of June will have their membership cancelled and have to pay the $10 joining fee to rejoin.

There are now a series of subscription panels and buttons on the Join Us page where you simply select your pro rata 'new member' payment based on the month you sign up or click the renew button in June. All of these online payments are designed to work smoothly, securely and easily with PayPal who receive payments by credit card and from your bank account. PayPal accounts are simple to set up. www.PayPal.com

As TASSA steers firmly away from the old, outdated paper systems that just mean more work and expense for Beverly, we are now offering direct deposit via online banking or over the counter at bank branches, using Westpac or from other banks for a small fee. All the details are on the Join page (and the end of this email). If members still insist on paper payments they can send cheques or money orders via ‘snail mail’ including their details, to arrive at the start of June each year. Pro rata payments for new members paying via post can be calculated using the payment chart on the Join Us page.

Donations
Along with lower fees, easier online renewals and pro rata subscriptions, TASSA now promotes online donations as part of the same payment panel. This is to encourage members with some extra money to make donations to TASSA to support our ongoing work and help clear Beverly's existing debts from running TASSA herself for the last 5 years.

When you renew each year you are encouraged to look at what you can afford to donate so as to receive a 100% tax deduction. We are also encouraging members to bequeath amounts in their will. This all supports TASSA at no additional expense to members. All donations will be recognised in our newsletter and in a special donations page coming soon to the website. Be the first!

Media
Over the coming year, TASSA will be launching a number of profile raising campaigns in the print and broadcast media. Members can help with this by sending us the email contact (and contact person) for their local community newspapers so that TASSA can arrange to run free charity-based ads promoting Sjögren's awareness and offer support. We will also be producing a 30 second TV Community Service Announcement that will run nationally in city and country areas.

This will be supported by appearances on various TV and radio shows throughout 2009 as well as articles in major popular publications. Telling the story of Sjögren's sufferers will help attract more members who we can help but will also develop a groundswell to be able to approach governments and the medical establishment for funding and support.

Feedback
Let TASSA know any additional ways you feel we can further improve our organisation and website, what you would like to see and explore, any new medicines, products or information you find, any ways you can see to promote Sjögren's to Australia and how the information from TASSA is helping you cope with Sjögren's. We can always put it on our testimonials page.

Conclusion
All of this together is designed to make Beverly's job easier while also greatly raising the profile of Sjögren's and helping more people with more information for lower fees. We look forward to your cooperation in the coming years. TASSA also needs your help as ‘Volun-tears’ to set-up and run support groups and with donations, so drop TASSA an email and let us know how you can help.

TASSA, Beverly, Jay and our various volunteers look forward to raising awareness and assisting everyone wherever possible. Remember, if you are a desperate member and need some advice, just drop Bev an email or make a quick call and she will offer what help she can.

All the best,
TASSA - The Australian Sjögren's Syndrome Association inc.