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
- Social issues
- Health issues
- Humorous experiences
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!!!
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.
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.
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.
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.