Welcome to the website of the Child Growth Foundation (CGF), the UK’s leading charity focusing on children’s growth and endocrine issues. We also have a large and active adult membership.
On this site, you can find helpful information whether you are a parent whose child has a suspected or diagnosed growth problem, an adult or family member of someone with a growth or endocrine disorder, or a medical professional.
We aim to:
- Support and encourage all children or adults with growth disorders, and their families, in every way we can
- Promote and fund research into the causes and cure of growth and endocrine disorders, and publish the results
- Educate the public and support/advice medical professionals, in the challenges those with growth and endocrine disorders are likely to face
- Encourage medical professionals at all levels to monitor growth and development. We provide training and equipment to ensure that all growth measuring is undertaken accurately and appropriately
If you would like more information on the activities of the Foundation, or have any concerns and would like some advice please contact us.
A prospective study validating a clinical scoring system and demonstrating phenotypical-genotypical correlations in Silver-Russell syndrome
Some of you may know, The Magic Foundation's RSS/SGA R&E Fund, in conjunction with Dr Harbison and Dr Netchine, began an RSS phenotype-genotype study back in 2008. This study resulted in a new, statistically strong, RSS clinical scoring system (which we have been using in our free screenings). Effective TODAY, you can click on the link below and receive a free copy of our study article, which has been published in the Journal of Medical Genetics.
Our scoring system (now called the Netchine-Harbison RSS scoring system) can help aid physicians in determining which subjects should undergo RSS genetic testing versus molecular testing for other possible causes for the child’s growth failure and physical characteristics. One highlight about our study findings - our scoring system captured 100% of the children who would later test positive for 11p15LOM and all but one child who tested positive for matUPD7. The article also includes a screening input form and directions to assist local doctors. Thank you to so many of you for either participating in the study and/or making donations along the way enabling us to complete this ground-breaking study.
We are pleased to announce that we have been awarded a grant from Genetic Disorders UK, to help towards the financing of our annual convention.
Annual convention 2014 videos
During last years convention, members of the youth group interviewed CGF members and staff about the CGF. Have a look at the videos on the news page.
STAARS (UK) The Study of Adults and Adolescents with Russell-Silver Syndrome in the UK
As some of you are aware, we are recruiting to ‘The Study of Adults and Adolescents with Russell-Silver syndrome’ (STAARS) at University Hospital Southampton. We have now started seeing participants outside Southampton so if you are interested, we could arrange an appointment at your nearest genetics centre.
We are collecting information on long-term health issues and growth in RSS, in order to help families to make the decision about treatment. We are also looking at what it is like to live with RSS. In order to find significant results we have calculated that we need to recruit 100 people with RSS to the study. This really is our BIG challenge at the moment and we only have until the end of the year.
There is a single study appointment with Dr Kemi Sodipe, which includes a discussion, an examination and some blood tests.
We feedback test results to participants after the visit and we contribute to travel expenses.
We will report findings of the project, both in scientific journals, and directly to the CGF.
For further information, please contact:
Jenny Child - email@example.com who will post information leaflets with full details. Alternatively, please contact the STAARS team directly on: STAARS@uhs.nhs.uk. There is also information on the website www.southampton.ac.uk/geneticimprinting
An intrepid couple (good family friends and god-parents to Emily Pidcock), Alison and Mike Smith, are challenging themselves with an action-packed year of sporting events - 20 sprint and 15 extreme sport events including a duathlon, a marathon and a first-time triathlon (neither are confident about the swimming!). The wonderful news is that they have chosen to complete it in aid of The Child Grown Foundation, and the Marie Curie Trust, in the hope of raising funds and spreading awareness about our charity and the rare conditions it supports.
Please see their website for full details and the proposed schedule of events: http://www.abbeyrunners.co.uk/extreme2015 (please note that some of the later events are still awaiting confirmation of participation, however Mike and Ali have a list of back-up events in case any of these cannot go ahead).
Please click here to go to Alison and Mike JustGiving page
The Child Growth Foundation is pleased to announce that it will now be offering advice and support for families and individuals with Weaver Syndrome.
'New triggers discovered in formation of pituitary tumours in children'
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