Our site was accidentally erased from the server a couple weeks ago, and Telia, the largest Internet provider in Sweden, did not have a functioning backup. We have worked hard to restore the site, but much work is still to be done. For the moment there are no pictures, only text. We apologize for this, and hope to be able to restore everything in the near future.
The 2009 Family Weekend was a success
Sue Edwards, coordinator of the TAR Syndrome Support Group reports:
On the 31st October – 1st November 2009 we held our bi-annual family weekend at the Holiday Inn in Coventry. It was well attended by families from the UK and Europe. Our speaker this year was Andy Cook from Canine Partners. He brought along ‘Frodo’ – a very clever Labrador who does demonstrations for their organisation.
Frodo
Frodo showed us all how he opens cupboards, takes washing out of the washing machine, switches light switches on and off, helps with dressing/undressing, lifts and lowers wheelchair footplates and picks things up for his owner. Andy explained how each dog’s training is adapted to suit the exact requirements of the client. For example, in the case of a client with TAR Syndrome the dogs can be trained to reach light switches, lift buttons etc by lifting up onto their hind legs. They can also be trained to help their client up from the floor if they fall over. They can even put credit cards into machines but, we were reliably informed that they cannot read or steal pin numbers!! Frodo was a great success and very popular with the group especially the children!
We then split into workshops. The adults attended a workshop on disability finances, the young people attended a discussion on bullying and the very young children attended a creche. Feedback from the workshops was very positive with everyone feeling that they had learned something new that they did not know about before. In the evening we had a meal during which the raffle was called followed by a disco/kareoke. The kareoke was so popular that there wasn’t time to fit in everyone who had put their name down to sing! The teenagers and twenty somethings managed to stay up most of the night on Friday and Saturday and reported that they had enjoyed the weekend very much.
Pete Williams
On Sunday morning we held our AGM which was very well attended. There was a financial report and some discussion about things the group might do next. Pete Williams from the Thalidomide Society attended again this year and all of the families felt that his presence was very helpful as he had so many tips to offer about independent living in adulthood. He brought along gadgets to show the group and spent a lot of time with the teenagers and young adults offering support and advice.
During the AGM we discussed furthering our links with the Thalidomide Society as they have shown an interest in linking up more closely with our group. This was felt by the families to be a positive development. Following the AGM many members of the group took turns to sit in James Toland’s adapted car and try out the controls. Many parents of the younger children reported that they found this very helpful as it enabled them to visualise their own child driving one day no matter how severely they were affected by TAR Syndrome.
Before leaving after lunch on Sunday the group members filled in feedback forms. The comments they made were very positive. If you would like to know more about attending the support group family days, please get in touch. You would be given a very warm welcome.
Why we seek the HON accreditation
European citizens are increasingly turning to the Internet and the World Wide Web for medical information (1); the percentage of the European population that has used the Internet for health purposes was estimated at 52.2% in 2007 (2). Parents to young children, and parents to children with a chronic disease or condition in particular, are among the most frequent users of the Internet to seek health information (3).
This development raises the ethical responsibility of publishers of health related Web sites, including us. Accordingly, in 2003 we decided that our Web site must comply with recommended ethical principles within the EU for health information provided on the Internet. Matters concerning aim, responsibility, ownership and funding, advertising, privacy, copyright and site administration are since then clarified in the document named ‘About’. Furthermore, all links to other Web sites are applied as to make clear whether the displayed pages belong to our own Web site or to other Web sites.
We think that the continuing accreditation by the Health On the Net Foundation (HON) that we have had since then proves that we have been successful in our ambition to provide information about the TAR syndrome and the consequences it may have for those affected in a sound and trustworthy way. We are very grateful to the HONCode team for their reviews of our site, most recently in February this year, for helping us to follow the HONCode principles.
Please, take a couple of minutes and read the eight HONCode principles. We also recommend MedHunt, a search service for medical information provided by the HON.
- Andreassen HK, Bujnowska-Fedak MM, Chronaki CE, Dumitru RC, Pudule I, Santana S, et al. European citizens’ use of E-health services: A study of seven countries. BMC Public Health. 2007;7:53.
- Kummervold PE, Chronaki CE, Lausen B, Prokosch H-U, Rasmussen J, Santana S, et al. eHealth trends in Europe 2005-2008: A population-based survey. Journal of Medical Internet Research. 2008;10(4):e42.
- Bouche G, Migeot V. Parental use of the Internet to seek health information and primary care utilisation for their child: a cross-sectional study. BMC Public Health. 2008;8:300.
TAR Family Weekend 2009
The TAR Family Weekend 2009 will be held on the 31 October and 1 November this year. Read more in the 
Invitation Letter and the Reply Slip.