Research project: What are the neurodevelopmental, behaviour and feeding issues in children and young people with Silver-Russell syndrome?

Research project: What are the neurodevelopmental, behaviour and feeding issues in children and young people with Silver-Russell syndrome?

Researchers at Aston University are working with Birmingham Women’s and Children’s Hospital to better understand the needs of children and young people with Silver-Russell syndrome.

 

The research team are inviting parents/carers of children aged 3-16 years with a diagnosis of Silver-Russell syndrome (SRS) to take part in a questionnaire study about neurodevelopmental, behavioural, and feeding characteristics of SRS.

 
 This study will help to better understand the specific needs of children with SRS, so that children and families can be better supported. All families that take part will receive a £10 voucher as a thank you for their time.

 

 

How can families become involved?


If you would like to take part in the study, please express an interest by:

• Emailing: Courtney Greenhill (Research Assistant) – [email protected]
• Telephoning and leaving a message: (+0044) 0121 204 4307
 
You can then either request that more information is sent to you by post, or you can be given a link to a study where you can read more about the study and complete it online.
 
Registering an interest does not commit you to taking part. You will have a chance to make your decision about getting involved once you have read the information sheets. 
 

Who are the researchers working on this project? 

  
This research is being led by Prof Jackie Blissett at Aston University. Members of the research team at Aston University, Birmingham Women’s and Children’s Hospital and the University of Birmingham are shown below!
Thank you very much for your interest in our work!
6th July Meet Up: Noah’s Ark Zoo Farm, North Somerset

6th July Meet Up: Noah’s Ark Zoo Farm, North Somerset

Our next Meet Up event will be at Noah’s Ark Zoo Farm, Clevedon, North Somerset on Saturday 6th July and we’d love you to join us!
 
Prices are £13.25 per person with payment required to confirm your place. Children under 2 years old are free. 
Please email [email protected] to book.
 
After the success of our first Meet Up in Milton Keynes in February we have been gathering feedback on where to host future events including locations and venues. We’re so pleased to be hosting this next event in North Somerset and are looking to plan more events next year across the UK!
CGF attends 2024 ICOSEP Meeting

CGF attends 2024 ICOSEP Meeting

Last week our Chair Jeff and Vice Chair Jessica represented the CGF at the 2024 ICOSEP Meeting.
 
ICOSEP, which stands for International Coalition of Organisations Supporting Endocrine Patients, is working to unite all endocrine groups, medical societies and patient organisations into one global communication network to collectively raise awareness of monitoring children’s growth and associated endocrine challenges.
Youth Ambassador opportunity!

Youth Ambassador opportunity!

Would you like to join the CGF as a Youth Ambassador to help drive our support for young people? Or do you know a young person you could share this opportunity with?

We are looking for people aged 16-25 years old who have, or had experience of, a growth condition or concern. This is a new, voluntary role to help make sure that young people’s voices are heard on what matters to them.

We’re so delighted to have already received applications and can’t wait to work with our 3 new Youth Ambassadors!

To apply or find out more info please contact our friendly team at [email protected] and request a Youth Ambassador Info Pack.

CGF News – please share your views!

CGF News – please share your views!

CGF News is Child Growth Foundation’s bi-annual newsletter.

A printed copy is sent to our paid members of the charity, and a digital copy is available to all to read online.

We’d really value your input and thoughts on CGF News to make sure we bring our readers the content they want to see and read!

Please complete our short, anonymous survey to share your views with us. 

This should take approximately 5-10 minutes to complete, and your responses will help shape our future edition of CGF News.

Convention 2024 booking now open to members!

Convention 2024 booking now open to members!

Convention is back!

Taking place Friday 25th – Sunday 27th October at Delta Hotels Warwick.

We’re so excited for our annual event of learning and support for families affected by rare growth conditions and concerns. 

Online registration is now open to full, paid members.

Members booked to attend convention will receive a free member goody bag at the event. 

With a range of topics and sessions planned for our Saturday daytime, we are working away to bring attendees another packed agenda. Our draft programme is shared here – please note this is subject to change until the final agenda is confirmed. The full speaker line up and event programme will follow soon!

We look forward to seeing familiar faces and welcoming new attendees joining too as we all come together for our special CGF weekend, with extra time planned in this year for those who’d like to network and socialise with others.

Registration will open to non-members from June onwards.

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