The Turner Syndrome Support Society [TSSS] is run by a small team of one full time and one part time member of staff. Arlene Smyth is the Executive Officer and founding member of the TSSS, she has an adult daughter with TS who was diagnosed at birth and has a great deal of knowledge and experience to share with you. Carlene Connor is our Admin Assist and has a sister with TS and able to help you, through her own experiences too. We also have a wonderful team of volunteers all closely involved with Turner Syndrome [TS].
We offer free information and support to anyone with TS their friends or their family. We can be contacted by phone, e-mail, letter, through our website and social media. Membership is not compulsory but does allow you to attend our national conference and access our UK wide members contact network. Your data is protected by us and not passed on except within the membership and then only with written consent and express permission. The membership fee of £35 cheque or online via TSSS shop or the TSSS preferred way to join is, £30 per year on the 1st of June by standing order, or a monthly standing order of £2.50 or more. Standing order greatly reduces our admin and can be cancelled at any point by your instruction. This enables TSSS to continue to offer support to others and to increase awareness and knowledge about Turner Syndrome throughout the UK.
TS is a ‘cradle to grave’ condition and as such requires medical treatment throughout life. The Society actively promotes the setting up of ‘one stop’ adult clinics for those with TS and the smooth transition from paediatric to adult clinic for teenagers with TS. Enquiries about TS from health, education, social service and other relevant professionals are welcomed. Promoting greater awareness of all aspects of TS amongst the general population is one of the aims of the Society.
Whether you are the parent of a newly diagnosed daughter with TS, a teenager or adult woman with TS, or pregnant with an in-utero diagnosis that the child you are carrying has TS, the Turner Syndrome Support Society is there to help you. Sometimes all you may need is to hear a friendly voice or to have the listening ear of someone who understands what living day to day with TS is like. You may just want information about TS, or have specific questions. This is the service that the Society aims to provide and if it cannot instantly provide an answer, it will certainly know someone who can. You may just want contact with another parent or adult with TS. By becoming a member, the TSSS can put you in touch with someone as close to where you live as possible or at least provide telephone or written contact via its contact network.
Membership offers access to a large membership network for social contact with others who share the same interest and concerns. You can join one of our friendship groups if there is one in your area. If there is not one in your area, you can help start one. The TSSS has developed a Friendship Group Pack to help you get started.
Members of the Society receive regular copies of ASPECTS, the TSSS newsletter. The title of the newsletter has been chosen to reflect its intention to cover all aspects of Turner Syndrome from day to day living, medical issues, research, education, social issues and more, within the newsletter. We also produce a monthly E-bulletin with up to date information.
Each year the Society holds an annual conference in Chorley, Lancashire and a number of open days around the country, sometimes with a theme i.e. Education & TS, HRT & TS, but always with a social element. Experience has shown that one of the most important needs of those with TS and their families is to have contact with others who share their experiences. Parents of young girls, adults and teenagers with TS benefit enormously from meeting each other at these events. Lasting friendships are formed, especially amongst the teenagers with TS.
The society is proud to have a wide range of information available for you. The majority of our information leaflets are free to down load. There is a small charge for some of our publications, this allows us to continue to update and develop future publications. During these difficult economic times we understand purchasing copies can be difficult. To help we do have loan copies of booklets available from the TSSS office upon request.
The TSSS is there to support anyone affected by TS and offers that support free of charge. However by joining the TSSS you are helping us stay up to date and in turn keep you up to date with any in medical information and research into TS. The benefits are of meeting other families are invaluable.
We do hope you are able to join us and become part of the TSSS family.