TARSS meets at CGF

The Child Growth Foundation is having their annual conference on the 5th November 2011, and for the first time more than 3 RSS people have registered to attend the same conference.

At the momemtnt 6 RSS people have registered and 5 of them are members of the Facebook group TARSS (Teen and Adults with Russell Silver Syndrome).  Having been in contact with each other through the TARSS group it is incredibly exciting prospect to finally meet each other in person.

Speaking with parents of RSS children, who are also getting ready for the conference, they are really looking forward to chatting with RSS adults to find out what life is like as an older person with the syndrome.

The CGF have organised a few seminars for RSS adults attending, including a talk by a geneticist from Southampton who is going to explain to us about genetic testing for RSS people. This is due to the fact many of us have never had this testing, and also she is going to discuss the possibilities of undertaking a research study into RSS in adulthood. The Doctor hopes TARSS members will play an important role in facilitating this study and its outcome.

I hope all attending have a positive experience and that the important need to support RSS teen and adults continues to be recognised and pursued by all growth foundations.

I will post another article after the conference with experiences and highlights of the event.

Teens and Adults with Russell Silver Syndrome – Support Group Update

I can’t believe it has been 6 months since I created the TARSS (Teens and Adults with Russell Silver Syndrome) online Facebook group.  From the creation of the Facebook group I have seen positive continuous progress in the number of members, number of posts and number of comments.

We currently have 66 members from various parts of the world, Scotland, England, Wales, Ireland, Channel Isles, USA, Spain, Chile, Estonia, Argentina, Italy and Finland.  The various topics that we’ve been chatting about include:

• Issue of growth hormone use
• Driving
• Clothing
• Social issues
• Health issues
• Humorous experiences
• Employment

The teenage members are finding the group a positive resource in accepting and making the most out of being a person with Russell Silver Syndrome. The older members are enjoying sharing  experiences with each other knowing that most of us have gone through and experience similar issues.

I can only speak for myself but I have found the group to be a really positive step in helping to raise awareness and support for Russell Silver Syndrome after childhood.  Although the group is totally independent, I am in contact with the Child Growth Foundation in the UK and the MAGIC in the USA and hope to help them further the needs of people with RSS.

All RSS teenagers and adults are welcome to join the TARSS group, please contact me through Facebook or via the link available on this website if you wish to join.

Here’s to the next 6 months and more progress!!!

Support Group For People With Russell Silver Syndrome

Teens and Adults with Russell Silver Syndrome (TARSS) is an independent support group on Facebook.   With over 50 members and growing, the group is great for sharing information, advice and tips on living with the syndrome.

If you know someone with RSS who would benefit from joining the group, please share the group’s link below.

Teens and Adults with Russell Silver Syndrome Support Group on Facebook »

Growth Convention Round-Up

If you are looking for support or would like to meet others with RSS, you have the chance by joining one of the conventions in either the United States and the UK.

United States

MAGIC Foundation – Adults Convention
is on from 10th to 12th June 2011 at the Marriott  O’Hare Hotel in Illinois
A Russell Silver Syndrome division is not included as part of the adult programme, however MAGIC is willing to support the creation/attendance of such group, but need expressions of interest first.  Please contact the MAGIC Foundation or Kim on the TARSS Facebook group in in the first instance.

Download the adult convention programme book » (PDF)

MAGIC Foundation – Children’s Convention
is on from 14th to 17th July 2011 at Westin Yorktown in Lombard, Illinois.
A chance for parents with children with Russell Silver Syndrome to meet other parents facing the same issues.
People with Russell Silver Syndrome are also welcome.  MAGIC will try and arrange seminars and events for people who wish to attend.

MAGIC Foundation website »

With both conventions, you need to make sure you are a paid member.

United Kingdom

Child Growth Foundation
5th November 2011 in Northampton

The UK’s version of a growth convention for parents with children with various growth conditions, including Russell Silver Syndrome.

RSS Adults/Teens
Depending on numbers of RSS teens/adults attending, seminars etc will be arranged. Further details/information to follow as convention details are made, anyone wishing to attend should ensure they are current members of the CGF.

Contact the CGF for more details or talk to Kim on the TARSS Facebook group.

UK Growth Organisation Appoints RSS Adult Co-Ordinator

Hi,

My name is Kim Taylor and I’m a 32 year old RSS adult, 4’3″ tall with no GH treatment.  I live in Scotland, UK.  I have recently been appointed RSS Adults Co-ordinator for the Child Growth Foundation (CGF).  My main aim in this new position is to raise the profile of RSS in teenage and adulthood.

I hope to help the CGF to take steps to organise research in RSS after childhood and to get these findings published for future reference.  I hope to encourage more interaction and support for RSS teens and adults through the CGF and also the TARSS group (teens and adults with russell silver syndrome) on Facebook.

If anyone has suggestions to help me in my new endeavours they would be very much appreciated. Please don’t hesitate to contact me through this website, TARSS on Facebook or the CGF.