News

Can you help us with a Sotos Syndrome Study?

Chloe Lane is studying for a Ph.D. at the University of Sheffield. She is looking for both children and adults with Sotos to take part in a research project to find out about the cognitive abilities of individuals with Sotos Syndrome. The study will involve using a...

Diagnosing Sotos Syndrome

This is James’ Sotos story as told by his mum, Michelle. From birth, James appeared generally floppy and lethargic and he struggled to feed. Several different conditions were suggested and tested for which came back clear. After months of being in and out of hospital,...

Fighting for A Growth Hormone Deficiency Diagnosis

This is Jake’s story as told by his mum, Faye. It was at 8 months old, when Jake started nursery, that Faye believed that he could have a growth condition. It was a fight for Faye and her husband to be taken seriously, but through perseverance Jake had his first...

Can You Help Us With The STAARS UK Research Project?

This piece is taken from our newsletter. There is currently a Study of Adults and Adolescents with Russell Silver Syndrome in the UK (STAARS UK) that we desperately need help to recruit for. It details why this vital research is being carried out and how you can help....

The Road To A Russell Silver Diagnosis

This blog post, written by Ceri Reeve, documents her daughter Lyla’s first three years. It was a long and scary journey with repeated hospital stays, but eventually, with a lot of persistence, a RSS diagnosis was made. Lyla was born on 23rd December 2009 at 36.5...

Living with Russell Silver Syndrome

Georgia’s 18th birthday In this blog post, written by Jenny Child who works for the CGF, she talk about her daughter, Georgia. Georgia turned 18 last year and this piece details her RSS journey so far. I thought I’d start with a brief history of Georgia’s first 18...

An IUGR Story

In our inaugural blog post Lorraine Lloyd, one of our members, talks to us about her daughter Evie’s IUGR journey. When your baby is diagnosed with Intrauterine Growth Restriction (IUGR) you cannot help but Google and I found Google only gave me more questions rather...

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