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.