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A breakthrough in understanding the TAR syndrome

Researchers have identified an elusive gene responsible for the TAR syndrome, the medicalexpress.com reports. As a result, this research is now being transformed into a medical test that allows prenatal diagnosis and genetic counselling in affected families. Read more …

Announcing the 2012 Family Day!

We are pleased to inform you that the next family day will take place on the weekend of 24th March 2012. The format will be slightly different to previous occasions. As you may know we have been forging ties with the Thalidomide Society during the last few years; Sue is a trustee on their Board and we have been privileged to welcome thalidomiders as guests at previous TAR Family Weekends. There is a lot to learn from them and encouragement to take from them as people who have a lifetime of experience dealing with a disability which has a lot of similarities to TAR.

This year the Thalidomiders will not be having their usual formal AGM weekend as they are planning a big fiftieth anniversary celebration in London. As they are having a more informal event it seemed an ideal opportunity to liaise with them for our family day. So, we are holding a family weekend shared with the Thalidomide Society at the Hilton Hotel, Coventry. The idea is that we will have some time doing our own thing as the TAR Syndrome Group during the afternoon but join up with the thalidomiders for social time in the evening.

We will start after lunch, 2pm on Saturday 24th March and close at 11am on the Sunday. We will not be having a formal evening meal but there will be a buffet with social activities/music afterwards. We are hoping to invite a geneticist to update the group on where they are up to in their understanding of TAR Syndrome but this cannot be guaranteed at this stage. If anyone has ideas about activities in the afternoon please let us know and we will do our best to oblige. There is a swimming pool and leisure facilities available for guests staying at the hotel.

If you would like more information please contact us on Susyedwards@hotmail.co.uk and we will answer your queries / send you information on how to book.

Rooms are going fast so early booking is advisable!!

The 2009 Family Weekend Picture Gallery

Here are some photographs taken at the family weekend. Enjoy!

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.  

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.