Convention 2023: Save the date!

Convention 2023: Save the date!

It was brilliant to see so many of you at our 2022 convention in September, the first time we have been able to get together for our annual event since 2019.

Thanks so much to everyone who joined us, including our attendees, our speakers, entertainers and volunteers, for making such a great event!

We’re excited to share a save the date for our 2023 convention, taking place Friday 6th – Sunday 8th October as we once again coming together in Warwick. More details are to follow soon including details of plans for the Friday evening, Saturday daytime, Saturday evening and Sunday morning activities.

Visit our convention page for more details and to soon book online to join us.

Virtual Convention 2020

Virtual Convention 2020

Virtual Convention 2020

In October we delivered our (un)usual annual convention, which means that traditionally, on these pages, we bring you gloriously amazing pictures of fancy dress frivolity featuring superheroes, Disney characters, festival hippies and so much more. This year, we bring you a zoom meeting…

Yes, it was different. Yes, it was COVID and yes, it was lockdown. But we made the best of it! We were actually very nervous about it. We had some fabulous speakers and presentations lined up. We had the wonderful membership family ready to engage. We had an army of volunteer support. But what if the technology lets us down? What if broadband breaks? What if Zoom melts?

What if Neil sent out the wrong link for the first day of the Convention and only discovered the error half an hour before it was due to start! Surely, that would never happen – erm, well yes it did, and he is still very embarrassed about it!

That hitch aside it all went swimmingly well. All three days were thoroughly engaging, interesting and informative. We shouldn’t really be surprised. The Child Growth Foundation is built on connecting parents & families with each other and with the very best experts in the field. And that is what we did again. Fantastic speakers but more importantly all those who attended came wanting to learn, wanting to ask, and wanting to share. We all agreed the lack of the physical togetherness was a shame, but do you know what – it still felt a very close and intimate day, it felt like we all connected and it turned out to be a very personal, and enjoyable few days.

A Convention, but not as we know it…

Saturday 24th October – SRS/IUGR/SGA

The first day covered SRS/IUGR and SGA and was kicked off by a live Q&A session with Dr Justin Davies, that could probably have gone on all day! It didn’t, which is just as well as there were some fabulous talks lined up. Dr Helen Storr provided an update on the GRASP project findings and Dr Deborah Mackay gave us an overview of genetic diagnosis of SRS and SGA, as well as an update on the SRS research study the CGF is currently funding. We broke for lunch, and some left their cameras on so we could see what they were having! Before we all returned for an afternoon that explored adult health issues in SRS with Dr Karen Temple and cognition and behaviour issues in SRS with Dr Megan Freeth. The day finished with a group chat.

The support from the speakers was fantastic, some were recorded and some were live and we have to say a huge thank you to Dr Temple who was actually on holiday, well coming home from holiday, and following her recorded presentation came on live from her car on the motorway (she wasn’t driving!) to answer questions. It was amazing of her to give that time to us, and we were delighted to see her get home safely and be welcomed home by a very excited puppy!

Dogs were quite a theme of the three days, with many zoom-bombing pooches stealing the limelight of the talks!

Saturday 31st October – GHD & MPHD

Day two covered GHD and hypopituitarism and again, was very well attended. It was opened by the wonderful Dr Harshini Katugampola with the fabulously titled presentation “It Takes Two to Tango” which covered growth and puberty.

This was followed by a live, and very hands on, presentation by Endocrine Specialist Nurse, Claire Westcott, who talked about emergency adrenal crisis, sick day rules and management. This session walked us through how to inject, with live demonstrations involving oranges and out of date medical equipment! The oranges felt no pain from the injections but sadly, the medication was out of date so no discernible growth benefit was recorded!

After lunch Dr Helena Gleeson provided a much-needed guide to transitioning to adult services and after that Nurse Specialist Helen Smart gave a thorough overview of management and treatment options for GHD & hypopituitarism . The day was again finished off with a group chat that ended with an impromptu musical performance!

Saturday 14th November – Sotos Syndrome

The third day of our convention focussed on Sotos Syndrome and opened with a presentation by Dr Megan Freeth on cognition and behaviour issues. After a short break we returned to hear a super introduction to Sotos Syndrome from Dr Kate Tatton-Brown, followed by many, many questions.

Then came the amazing double act of Dr Alison Foster and Dr Alice Welham who took us through Sotos syndrome the pre-teen years and then Sotos syndrome the adult years. It was a really well-developed programme that gave attendees much opportunity to discuss concerns, and the speakers hung around throughout, answering questions and providing guidance. The third day was incredibly well attended and the group chat to finish the event went on for some time with a great deal of bonding and peer support. We received a lot of offers of help to build up our Sotos support network and we are incredibly grateful and look forward to what we can build.

Annual Convention 2019

Annual Convention 2019

Annual Convention 2019

The 2019 CGF Annual Convention was held at the end of October at the Warwick Hilton, just outside Stratford-Upon-Avon. It was a wonderful success and with the theme of ‘festival’, a glam-tabulous time was had by all.

The weekend was very well attended, with numbers slightly up on the year before, and we were fortunate enough to have a fantastic array of health professionals with a wealth of knowledge and experience behind them, including: Dr Kate Tatton-Brown who gave an overview on Tatton-Brown Rahman Syndrome, Dr Sue Jackson delivering a presentation on pituitary research with young people, Dr Trevor Cole gave an overview of Sotos Syndrome and Dr Reena Perchard who updated attendees on the BabyGRO study.

Other highlights included a joint presentation by Dr Alice Welham and Dr Chloe Lane on Emotional Difficulties with Sotos Syndrome and a presentation by Dr Claire Higgins on a psychological approach to eating difficulties. On the Saturday afternoon there was a talk by IPSEA who delivered on the cross-condition topic of ECHP and Education Law. The Southampton team, including, Professor Karen Temple, Dr Justin Davies & Professor Deborah Mackay, updated the SRS/SGA group on the latest developments.

The whole line up led to a very well-rounded series of talks and presentation, which hopefully meant something for everyone.

The children were taken good care of with creche facility and the gaming room. The theme in the evening was very popular with many children and adults getting into the festival spirit. Tom and Michaela put on an entertaining show for us and much dancing was done!

Feedback

“it was a really great event and amazing speakers, we did enjoy our time thank you”

“First time there I found it really interesting and helpful. Felt really welcomed and not alone.”

“A wonderful, informative, occasion filled with positivity and joy. Thank you.”

Annual Convention 2018

Annual Convention 2018

Annual Convention & AGM – 2018

The 2018 convention was attended by many parents, children and professionals, and throughout the day on Saturday, we had a vast array of eminent speakers, including Prof Karen Temple, Prof Deborah Mackay, Dr Emma Wakeling, Dr Assunta Albanese, Dr Lee Hudson, Dr Trevor Cole, Dr Kate Tatton Brown, Dr Megan Freeth, Dr Chloe Lane, Dr Alice Welham.

We are very fortunate to have some of the best healthcare professionals, endocrinologists and geneticists in the world and they give up their valuable time to come to our annual convention.

    “I always come away with more knowledge than I came with”

  Many of the professionals spend the whole day with us and talk to parents on an individual basis, offering their expertise in a very informal and relaxed setting. They all thoroughly enjoy their day with us and quite often learn as much from our members as our members learn from them.

We had a record amount of children attending this year and the youth group continues to grow in popularity, with many of the young people making new friends as well as enjoying meeting up with old friends.

At the end of a very hectic day, it was time to relax, have a drink and enjoy the company of others who understand what you are or have been through. There is nothing like the support of another parent, when you tell them about your struggles and they say, “that’s exactly what happened to us!” We are already planning our next convention, and as always, it will be great to see all our CGF friends again, as well as greeting new ones.

    “Very well organised and very beneficial to our family”

  Although the convention is for members of the CGF, we welcome new members from anywhere in the world and at last year’s convention, we welcomed members overseas again. What remains clear is that patient support groups and the help and advice patients receive from these groups, as well as other parents, cannot be underestimated. The same is true of healthcare professionals, who are increasingly relying on patient support groups to help their patients, which can only be considered as great progress for us all.

“an all round great weekend”

Child Growth Foundation

c/o Kinnair Associates Limited
Aston House
Redburn Road
Newcastle upon Tyne
NE5 1NB

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