Tag Archives: TARSS

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.

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Teens and Adults with Russell Silver Syndrome – Support Group Update

We support Teens and Adults with Russell Silver Syndrome

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!!!

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