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2024 was an exciting and very busy year for the Child Growth Foundation, and I am pleased and proud to provide an update on our activities and a review of the wonderful range of programmes and support materials that Catriona, our Charity Manager, and our staff team of Laura, Sally and Lisa developed and delivered.
A key focus for the CGF, last year, was the development of a response to the low level of public awareness and understanding of growth issues. I am sure you will appreciate that families grappling with concerns about their child’s growth may delay addressing these concerns or be unsure where to go for support. Also, I know many of you will be able to relate to the fact that when they eventually share their concerns with their GP, it is often common for their concerns to be contested and referral of their child to a specialist to be delayed.
The CGF, therefore, undertook the development of a campaign, involving both programmes of public advertising and GP education, to respectively encourage families to act on their growth concerns and to provide expert guidance to GPs.
The public awareness advertising campaign, which was launched to coincide with Children’s Growth Awareness Week, in September, was rolled out in print and digital media. To help us choose the final concept for our awareness campaign, some of you were involved in the market research, and I hope you were excited as I was when I first saw our advertisement, either on a roadside digital board or in The Sun and The Times newspapers.
The first part of our GP education programme took the form of two accredited GP education webinars, which were hosted by Pulse365 in March and July last year and brilliantly presented by Professors Helen Storr and Justin Davies. The webinars were much acclaimed by the GPs who attended them, and the CGF will continue to ensure they are viewed by many more GPs throughout 2025. They can be viewed here: childgrowthfoundation.org/hcp-education. We will also continue to develop other complementary projects to drive the earlier detection and treatment of growth conditions.
In addition to the campaign, the team continued to prioritise the expansion of direct support for families. Modernisation and updating of the CGF website were essential, and it involved the inclusion of much more information for the parent or carer who had concerns about their child’s growth before pursuing a diagnosis. Our specialist nurses, Lisa and Sally, developed a series of YouTube videos, explaining, for example, ‘Mid-parental height’ and ‘Bone Age,’ and video presentations like these have become an important and key feature of our communications. Our specialist nurses also produced a significant collection of guidance documents for parents / carers, in 2024, including ‘Measuring at home’ and ‘A parent guide to concerns about a child’s growth’.
The CGF has always recognised the value of lived experience, and certain guidance was developed by our team, in collaboration with parents, as top tips ‘From parents, for parents’: ‘When approaching your GP’ and ‘Mental health and wellbeing’. The CGF also appreciates the challenges often facing a child transitioning from paediatric into adult care and, in addition to making transition a major discussion topic at recent conventions, launched its first in a series of transition guidance booklets: ‘Transition: Silver-Russell Syndrome - Guidance and support for moving into adult services’. A second transition guidance booklet for Sotos Syndrome is already in planning.
Another series of books launched last year was the CGF education storybooks. The books are intended to raise awareness and understanding of growth matters and inspire a positive outlook. The first two books, ‘Your Height My Height’, authored by CGF’s Laura Roy, and ‘My Sotos Story’, authored by one of our trustees, Anthony Leyton-Thomas, have been widely commended and ordered in significant quantities. A third book, ‘Magnificent Max’, features Max the dog, whom we plan to adopt as a character in a range of planned CGF materials. The Magnificent Max storybook and height chart will be available on our website shop soon!
As always, one of the highlights of 2024 was the CGF convention, which took place in Warwick, in October. It was a pleasure to meet and speak to so many of you at the meeting, and it was so nice to hear that you appreciated the programme content and had a very enjoyable time. We always strive to respond to your requests for topics to be discussed, and the moving roundtable session, which gave families the opportunity discuss an entire range of issues and challenges with experts, proved to be extremely popular. Also, and for the first time at convention, we included an opportunity for adult attendees to participate in a choice of fun activities, including a dance lessson, arts and crafts classes and more, and these were hugely successful and great fun.
One other change to previous conventions was the removal of the CGF’s annual general meeting (AGM) from the agenda. Our AGM was held virtually in December, and it gave us the timely opportunity to express our deepest appreciation of their huge commitment to our charity of two highly prominent and valued trustees, who were stepping down: Nick Child and Rachel Pidcock.
Nick, who was the previous Chair, and Rachel gave unfailing commitment for many years, in a range of roles and with many responsibilities, and it is impossible to exaggerate our appreciation to both for their impact and contribution to the CGF and the families we support. We are all incredibly pleased that Nick and Rachel intend to stay involved and continue to support the CGF and its work. I am also pleased that the AGM gave us the opportunity to formally approve the appointment of two new trustees: Vanessa Boulanger-Twigg and Hannah Cumming. Both Vanessa and Hannah have lived experience and bring significant expertise to the CGF Board of Trustees.
I want to end my expressing my appreciation to everyone that enables the CGF to deliver its expanding support to families affected by growth conditions. I am grateful to the CGF team for their resolute commitment and hard work, to our Medical Advisors for their expert guidance, to companies for their collaboration, and to all those individuals who either participate or instigate their own fundraising events and volunteering. As you can appreciate, it is particularly challenging to raise funds during this economic climate, and we will always appreciate any support you can give us.
Many thanks and best wishes, Jeff Bolton
Update from Catriona
Charity Manager
catriona.taylor@childgrowthfoundation.org
Time absolutely flies by in a fantastic way here at the CGF, with such a brilliant range of activities, projects and events our team of staff, trustees, volunteers and Medical Advisors are invovled in to support the child growth community.
The Leave no shadow of doubt awareness campaign has been a particular highlight for me, with incredible support we received from a range of individuals and organisations to make this campaign possible, and as we got to share such an important message to those who have a concern about their child’s growth to let them know they’re not alone and that the CGF are here to support them in addressing those concerns. Find out more on page 16.
Collboration is such an important part of our way of working, and Children’s Growth Awareness Week was a lovely opportunity to not only raise vital awareness of growth conditions and concerns, but to also share messages with our communityfrom other individuals and charities through social media takeovers (read more on these on page 39).
We were, as always, delighted to see so many families joining us for convention and we really hope for those who attended it was an informative and insightul event...and that children had lots of fun! I’m so grateful to the Convention Planning Team, a group of staff and trustees, who dedicate many hours to make convention the special event it is. And the event wouldn’t be possible without others involved too, including speakers, session hosts and facilitators, panelists, entertainment, the childcare team and more. We are already excited to be working on our next convention.
Amongst a number of updates we’ve been making to our website includes updating and growing the healthcare professionals section of the site, at: childgrowthfoundation.org/hcp. One of the key aspects of our charity’s work - alongside supporting families, raising awareness, and enabling research - is to support healthcare professionals in the optimal diagnosis and management of growth conditions, and in this dedicated healthcare professionals section of our site we have education resources, downloads, an online order form for our materials
I’m extremely grateful to our team for for continuously working on a growing range of resources, including booklets, videos, storybooks, infographics and other print and digital materials, for a range of audiences including those with a diagnosed growth condition, those with a concern about their child’s growth, and those seeking a diagnosis.
As Jeff shared in his update, we said a fond farewell to retiring trustees Nick and Rachel, who have both made huge, positive differences to the lives of so many children and their families through their many years as trustees of the CGF. Whilst we are sad to say goodbye to Nick and Rachel, we’re pleased to welcome new trustees Vanessa and Hannah. I’m in awe of our voluntary Board of Trustees, past and present, and their dedication, commitment and enthusiasm to effectively govern our charity, and to ultimately, with our staff team and community of supporters, make a difference wherever growth is a concern.
Update from Laura Finance & Admin Manager
laura.roy@childgrowthfoundation.org
It was great to see everyone at convention in October, I hope everyone that attended had an enjoyable time.
Before Christmas we launched our latest storybook, My Sotos Story at: childgrowthfoundation.org/my-sotos-story. It is such a lovely book with great illustrations. I never expected I would be posting all over the world, including to Australia, France, USA and Canda!
We have sold over 150 copies, and orders are still coming in weekly! Hopefully, with your support, in the next few years we can increase the number of storybooks we offer to our community, including more condition specific stories.
I have recently been busy planning our Meet Up event, held at Gulliver’s World in Warrington this February, and we are looking for venues going forward for our future Meet Ups. It’s lovely to see family’s attend these Meet Ups and seeing the children meet other children with similar conditions.
We’ll share information on upcoming Meet Ups on our website at: childgrowthfoundation.org/meet-ups (or scan the blue QR code, right) along with in our e-newsletters and across our social media platforms. If you would like to attend our events, volunteer to help at an event, or have any ideas of future Meet Up venues, please email us at: events@childgrowthfoundation.org
In this edition of CGF News we are sharing our top tips for fundraising infographic (page 30). The ideas are remarkably simple, and all help raise vital funds.
If you are planning a holiday this summer, please go through either easyfundraising at: easyfundraising.org.uk/causes/childgrowthfoundation or Give As You Live at: giveasyoulive.com/charity/childgrowthfoundation and we will receive a donation in return for your booking, at no cost to you.
A great idea is recycling printer cartridges. I recently sent some to Recycle4Charity and they donated £10 to our charity. If your work or school do not already recycle printer cartridges, please start recycling them for us! It’s so easy, you go to: recycle4charity.co.uk/Register/C93475 and you can then post the printer cartridges to them with a free postage label.
Visit the Get Involved section of our website at: childgrowthfoundation.org/get-involved or scan the yellow QR code, right, to find out more ways to get involved. And if you have any other ideas to raise funds please contact us at: fundraising@childgrowthfoundation.org
Update from Sally, Growth Nurse Specialist
sally.majid@childgrowthfoundation.org
Another convention has passed and yet again I find myself reflecting on an amazingly fun, busy and rewarding weekend. The planning and preparation that goes into putting the event together, is always challenging, and a huge relief is felt by all involved, when the feedback is positive.
The programme and structure this year was slightly different, and I only wish I could have had the time to visit all the experts on each of the roundtables and attended every condition specific session. However, I was incredibly grateful to all those who attended the overgrowth session and so kindly reviewed our new Sotos syndrome information booklet. All comments and suggestions are currently being incorporated into version two which will then be reviewed by our medical experts before going to print.
Lisa and I were not only blown away by the number of people who chose to join us for our inperson Cuppa & Chat at convention, but by how openly and freely each attendee shared their stories and supported each other. This is the exact purpose of Cuppa & Chat, which we were very pleased worked so successfully in person too.
The Virtual Cuppa & Chats are open to anyone wishing to join us, and this year we will continue to put them on every other month. We had our first couple of 2025’s events in January and March, and keep an eye out for dates in May, July, September and November!
At the end of 2024 I was lucky enough to attend the ESPE (European Society for Paediatric Endocrinology) annual meeting in Liverpool (photos below). The event was attended by over 3,000 professionals, so it was a busy three days sharing our work, information and resources - my suitcase was certainly lighter on the ride home, which is always a good sign.
I attended the mTOR node PPIE workshop as an online attendee just before Christmas. The CGF are one of the patient groups representing our community affected by Smith-Kingsmore syndrome. To find out more about this research group visit: rd-research.org.uk/node/mtor-pathway-diseases. The meeting involved updates on the groups research and producing information as well as building the mTOR node patient organisation network.
If you haven’t seen them already, there are new pages on our website with information and resources for those with growth concerns, which you can view here: childgrowthfoundation.org/growth-concerns or by scanning the blue QR code, right.
We hope that these additions are a useful resource for anyone surfing the internet for answers and equipping families to address their concerns. Now for the next task of updating the booklet!
Our emotional health and wellbeing page is in the process of being updated and is currently under review by our Medical Advisors. It would be fantastic to have some of our members views on the new version before it goes live - if you would like to get involved in reviewing this, please contact me at: sally.majid@childgrowthforundation.org
Our Adrenal Insufficiency Support Packs continue to be available, so please get in touch if you would like one by emailing: support@childgrowthfoundation.org. If you have already ordered one, please let us know what you think as this helps us to plan how we might adapt and produce packs in the future, through our Adrenal Insufficiency Support Pack feedback form available at: https://forms.gle/bzj9YpjW8JV9GyFM7 or by scanning the yellow QR code, right.
Do you have a study, survey or research project to share?
If you are the organiser of a study, survey or research project you would like to share with our community, please contact our team at: research@childgrowthfoundation.org and we can share our request form with you to complete.
Update from Lisa, Paediatric Growth Nurse Specialist
lisa.hill@childgrowthfoundation.org
Hi all, well it’s been a busy few months again.
Two further videos have been added to our ever growing library of resources on our YouTube channel at: youtube.com/@childgrowthfoundation and our social media channels.The first on of 2025 to be shared was made with the aim of giving people an idea of what happens during a growth hormone stimulation test.
It can be an anxious time and some parents can feel overwhelmed at the prospect of spending a few hours in hospital for their child to have multiple blood samples taken. With this in mind, it led to the next video that gives some helpful hints and tips to try and make the day a little more bearable.
The plan is we will have a third part to this series describing what it’s like to start growth hormone injections. If anyone would like to be included in this, such as if you could send us a tip or piece of advice that you think would be useful to others, or if your child has anything to add for other youngsters that would be amazing, so please do let us know!
Myself and Sally continue to answer a range of calls and emails on the CGF’s Support Line. In 2024 we answered 159 phone calls and responded to 371 emails. We always encourage people to come back to us as many times as they need to and of all those phonecalls and emails 143 of them were repeat contacts. We are always pleased that people find/hear about us and use the Support Lineboth me and Sally love this part of our role. We know that some people can find it really difficult to reach out for help and find the courage to contact us so it’s lovely when we can offer some support and help in some small way.
We are always looking for ways to improve the support we offer and so if anyone has contacted our Support Line and would like to give some feedback we would really appreciate your comments. The feedback form can be found here: https://forms.office.com/e/eyxKb9jbKa or by scanning the QR code, right.
The Youth Ambassadors continue to work hard and plans are in place for ways to start engaging with our community of young people. They have lots of great things in the pipeline so watch this space! If there are any young people aged 16-25 years who have experience of a growth condition or concern that would like to join our Youth Ambassador volunteers please do get in touch at ya@childgrowthfoundation.org and we can send out an information pack and application form.
In October I went along to the British Society for Paediatric Endocrinology and Diabetes (BSPED) annual meeting. This three day event bought together a huge number of healthcare professionals sharing their latest research and practice. The CGF stand, which was full to the brim of our resources at the start, gave the opportunity for our resources to be shared and the fact it was almost empty by the end was great to see!
As ever, we have lots of projects and updates planned throughout this year. If anyone would like to get in touch with any ideas (maybe an information video you think would be useful) my email is: lisa.hill@childgrowthfoundation.org or get in touch with our Support Line through the details below.
Our Support Line
Our nurse led Support Line is available to anyone affected by a growth condition and those concerned about their child’s growth. We are here to listen and support you.
The Support Line is also available to healthcare professionals looking for information.
Complete our Support Line online contact form at: childgrowthfoundation.org/supportline
Email us at: support@childgrowthfoundation.org
Call our dedicated Support Line number on: 020 8995 0257
Scan the QR code, right
Support Line Privacy Statement
By contacting the Child Growth Foundation Support Line you are providing consent for us to collect, process and store your data to provide you with the information or services you are contacting us about. To read our full Support Line Privacy Statement visit: childgrowthfoundation.org/supportlineprivacy.
We are so grateful to the following fifteen experts, who together form the CGF’s Medical Advisory Committee.
They provide expert guidance to the CGF team and get involved in a range of projects with our charity to support children, young people, adults, families and fellow healthcare professionals.
Since our last edition of CGF News was shared we have been so pleased to welcome Emma Snow, Clinical Nurse Specialist in Paediatric Endocrinology and Rare Bone Disease, as a Medical Advisor.
Thank you Nick and Rachel!
Nick Child and Rachel Pidcock retired from their roles as trustees of the CGF at the end of 2024.
We are extremely grateful to them both for their years of dedicated support and commitment to our charity, including Nick's previous role as Chair, and the many, many children and families supported through their amazing volunteering. They will both be really missed by the CGF team!
Welcome to Vanessa and Hannah!
We are delighted to welcome Vanessa Boulanger-Twigg and Hannah Cumming as new trustees of the CGF, joining our fantastic volunteer Board of Trustees.
“I first heard about the CGF through the paediatrician we were referred to for our daughter. She has always grown very quickly and has consistently been above the 97th percentile for height.Although she doesn’t have any medical conditions, she found her height challenging to manage, especially in the playground, at school, and in her interactions with both adults and friends. As a family, we decided to seek professional help.
“This support gave her a strong sense of self-awareness and has helped her navigate and embrace her uniqueness with confidence.I am thrilled to have joined the CGF. The Foundation plays a crucial role in raising awareness, supporting families, and making a real difference for children who need our care and understanding no matter how different they are. From my first meeting, everyone was so welcoming and motivated. I am married with two children and a dog named Ruby. I live in London but frequently travel to France, where I am from, to visit my family, friends and elderly parents.” - Vanessa
“I officially became a trustee in August 2024. I have known about the CGF since I was a child, as I was diagnosed with Turner syndrome at around three weeks old. The CGF was a huge source of information for my parents and myself. I want to help other families who may be overwhelmed and reassure them that with rare disease diagnosis and with the right support we can thrive.
“I currently am working for a mental health charity and wanted to know more about how a charity is run. However, I worked as a teaching assistant for five years so am particularly looking forward to supporting the CGF’s Education & Training Steering Committee.” - Hannah
Vanessa
Hannah
Convention
Wow, what a brilliant time we all had at convention 2024! Thank you to everyone who joined us in October and for making it such a special event.
We loved hearing your feedback at the event itself, and have since enjoyed reading your feedback shared with us after the event, including in the post event survey. From feedback on fantastic speakers, brilliant sesssions and terffic entertainment, to lovely comments about the opportunity convention brings for special time for children, young people and families to spend time together, it’s an event our team are so excited to work on and it’s so heartwarming to see such happy smiles from those who attend.
Convention is an extremely special date in the CGF calendar, and we’re working on our next convention plans. We’ve held convention at Delta Hotels Warwick for a n umber of years and at present the venue is closed until November 2025, at least, and so we are unsure of when this will reopen for events like our convention.
We are exploring alternative venues and are excited about some venues we’re speaking with, to bring you a brilliant next convention. We’re looking to hold convention in spring 2026, with the exact date and location to be confirmed with you all as soon as possible, once we have finalised our new venue. We’ll announce convention details on our website and share with our e-mailing list - you can sign up to receive our email updates at: childgrowthfoundation.org/enews-signup.
If there’s anything you’d like to discuss in the meantime please contact us at: convention@childgrowthfoundation.org.
Our next convention
Meet Ups
Following the success of our first two Meet Up events in 2024, Laura, Jessica and Sally from team CGF were delighted to join families in Gulliver’s World Warrington this February for a fun filled day!
We’ve so far had over 100 children and adults join us across our three Meet Up events, and we’re busy planning more Meet Ups in 2025 and beyond, at a range of venues and locations across the UK. At the time of writing this edition of CGF News we’re planning to hold Meet Ups in May half term, in August and a festive Meet Up in winter.
We’ll announce future Meet Ups on our website and share with our e-mailing list. To find out more visit our Meet Ups webpage at: childgrowthfoundation.org/meet-ups (or scan the QR code, right) You can sign up to receive our email updates at: childgrowthfoundation.org/enews-signup.
We would love to hear from people who would be interested in supporting us to organise a Meet Up event in your area – please get in touch with us at: volunteer@childgrowthfoundation.org.
Leave no shadow of doubt
Our awareness campaign was launched during September’s Children’s Growth Awareness Week to reach families with a concern about their child’s growth, to encourage them to leave no shadow of doubt, trust your instincts and get in touch with the CGF.
The awareness campaign is a key part of our work to raise awareness and understanding of growth concerns and conditions, to support families in the child growth community, and to improve detection, and support the earlier diagnosis of, undergrowth and overgrowth conditions. The campaign has been made possible thanks to funding from Sandoz along with the CGF’s collaboration with and support from a number of organisations. As part of the campaign we have a new dedicated page of our website at: childgrowthfoundation.org/instinct
Kicking off the awareness campaign we had fantastic digital mall and roadside boards across England and Scotland displaying the campaign imagery and wording, as shown in these super photos – Laura and Sally from our CGF team spotted a campaign board (below) at one of the various Birmingham locations it’s on display during Children’s Growth Awareness Week, and there was an evening spotting of the campaign in Tooting, London!
We also received wonderful coverage in national print media, with coverage in The Sun and The Times newspapers helping us reach as many families as we possibly can to encourage them to trust their instincts about their child’s growth. More recently we’ve had coverage in early 2025 on website WeTransfer and since this coverage lauched we’ve had over 9,500 unique clicks from WeTransfer to the dedicated campaign page on our website.
We also have a webpage for our community who’d like to find out more and to help us spread the word, at: childgrowthfoundation.org/campaign-instinct. This page includes further details about the campaign plus social media images and posters (like the one featured on the opposite page) that you can download to print and share with friends, family and colleagues to help raise awareness, to spread this important message to families with a concern about their child’s growth.
Peer Support Programme
We’re delighted to have a growing number of Peer Support Groups, providing support to parents and carers of children.
Each group has a dedidcated page on our website at: childgrowthfoundation.org/peer-support (or scan the QR code, right) where there’s a short form you can complete to register your interest with the relevant group leader.
If you’d like to speak to us about setting up your own group please contact us at: volunteer@childgrowthfoundation.org
Youth Ambassador Programme
We’re so grateful to our Youth Ambassadors who are working together to engage the voice of young people and young adults with growth conditions and concerns, and also creating dedicated communications. We’ve had some brilliant communications from our Youth Ambassadors including last year’s Children’s Growth Awareness Day, and also this year’s Rare Disease Day as you can see below.
To find out more about the programme visit: childgrowthfoundation.org/youth-ambassadors or scan the QR code, right.
Medical community updates
Engaging families in East London with research, advocacy and support around child growth
By Isabella Cordani and Joanna Orr
In July last year, a group of researchers hosted an event for study participants after winning a Public Engagement grant from The Centre for Public Engagement. The team had recently completed a study called Child Growth and Development in East London (CGDEL), which involved local children from Tower Hamlets.
Children in the UK are not routinely screened for growth, even though national guidelines state that all children should have their height measured twice between the ages of 2 and 5 years. The team sought to assess the feasibility of screening for growth disorders using a novel, automated growth monitoring algorithm in pre-school age children. A total of 555 children with a mean age of 26 months completed the first visit, and 332 returned for a follow-up visit.
With the public engagement grant, the team were able to fund a Saturday morning event at the Mile End campus, in order to deliver research results to families in the community that took part in the study. This free event, with Child Growth Foundation, was designed to be welcoming and childfriendly, with families encouraged to also bring any siblings other than the child that took part in the study.
A series of short talks were delivered by the research team, by the Child Growth Foundation (who provided funding towards the event thanks to a grant the charity received) – and by Tower Hamlets GP Care group, who facilitated the study visits and collected data. There was a children’s entertainer running a magic show in the break, refreshments provided, and opportunity for caregivers to speak to any of the staff running the event. Interpreters were on hand to assist any families for whom Sylheti is a first language, to reflect the demographic of the research sample, and there was an option to join on Zoom.
The event was successful and the families who attended were very engaged and enjoyed the talks. Anonymous feedback forms were collected at the end, which showed that participants felt that they ‘knew a lot about the benefits of research to the local community’ having attended the event, and the majority said they ‘would participate in another research study in the future’. Importantly, the researchers also received some useful feedback from caregivers about their motivations for taking part in research, and for how dissemination events like these could be improved further.
Studies and surveys Transition – Moving to Adult Healthcare Services: An Overview
By Yolanta Breese
Introduction
I am a parent/carer of a young adult who was diagnosed with several pituitary conditions following the removal of a craniopharyngioma as a child.
I am currently studying for a PhD at the University of Plymouth. This article is about the findings from one of my studies exploring the experiences of young people as they undertake, or have previously undertaken, the process of transition from a paediatric (children’s) hospital to an adult hospital.
What is transition?
Young people with childhood onset pituitary conditions will at some point transition (move), from a children’s hospital to an adult hospital. This transition usually occurs at a time when other things might also be happening in the young person’s life – for example, moving to secondary school or university. The transition to adult services should not happen haphazardly, but should be a carefully thought through process, that is developmentally appropriate, and patient-centred, to ensure that both continuity of care and optimal care is provided.
My PhD study with The Pituitary Foundation
This study was undertaken in collaboration with The Pituitary Foundation, to explore the ‘lived’ experiences of young people with a pituitary condition as they undertake, or have previously undertaken, the process of transition. The main aim was to understand the issues and challenges that can arise during the transition process.
There can be anxiety associated with change, in particular the change from the relative safety and comfort of a children’s hospital to moving to an adult hospital and the uncertainty of what adult services will be like. Children/young people and families can become extremely attached to individual staff as a lot of time has often been spent on the wards at a children’s hospital. Some members of staff at a children’s hospital will be seen as part of an extended family, and the child and family may be reluctant to move on, due to the compassion and trust that has been built up from diagnosis through to surgery, treatment and recovery.
The young people who took part in my study talked about the significant cultural differences between paediatric and adult services. They described how children’s hospitals take a more holistic approach (with whole family involvement), in contrast to the focus being more on the medical management and maintenance of the young person’s condition within adult services.
It became clear that communication issues are a key concern. It was evident that very little, if any, discussion took place between the young person and healthcare professionals at the time of transition to adult services, resulting in young people’s queries about adult services not being answered.
Additionally, there was a distinct lack of communication between young people and medical teams within and between hospitals, General Practitioners (GPs) and other outside organisations, for example, the Ambulance Service. This required the young person to move from being in a more ‘passive’ role within a children’s hospital to a more ‘proactive’ role, taking responsibility for their own self-management, within an adult hospital.
Some of the young people talked about their care experiences during the Covid pandemic where some in-person consultations moved to telephone consultations, particularly within adult services. Though this was considered to be a ‘safer’ option for the young people involved during this time, this resulted in less frequent routine tests being carried out and delays in relaying test results. In some cases, this led to reduced quality of care and a deterioration in health of the young person involved.
For the general population, the Covid pandemic is considered something in the past, but for some young people who may be immunocompromised (weakened or lowered immune system due to their pituitary condition), Covid has never gone away. Precautions such as mask wearing, having windows open in enclosed spaces and handwashing still have to be undertaken.
There are things that could be done to improve young people’s experiences of transition. For example, GPs could have a key role to play during the transition process as they are often the first port of call for any medical need and may also be familiar with the patient/family over many years. However, in talking to the young people it became clear that their GPs had very limited, if any, contact with the hospital at the time of transition.
Having a named nurse (endocrine nurse or transition nurse) in place to oversee the process of transition would also help, ensuring that appointments are made and allowing the young person to ask questions about the adult hospital and provide reassurance. Having a support system in place, whether provided by family, friends, healthcare professionals and/or organisations such as the CGF and The Pituitary Foundation, is essential so that the young person does not have to deal with the many challenges of living with a pituitary condition on their own. If there is no transition process in place, young people are at a higher risk of falling through the gap between children’s and adult services. This results in negative outcomes for the young person, not only at the time, but also in the longer term, adding more pressure on the NHS.
It is anticipated that these findings, alongside the further studies being undertaken with healthcare professionals, will have important implications and relevance to clinical practice that will impact positively on service provision for young people at the time of transition and beyond.
Becoming a member
When you become a full, paid member of the CGF you are not only make a real and lasting contribution to our charity’s work but there are also various benefits to you, including:
▪ Member-only benefits for convention including early bird booking
A printed copy of this bi-annual newsletter, CGF News, delivered to your door
▪ Access to the members-only area of our website
▪ Voting powers at our Annual General Meeting
▪
▪ Early access to a number of new CGF resources before their release
Full membership costs
£25 a year to UK residents
▪
▪ £30 for those living overseas
Find out more at: childgrowthfoundation.org/membership or scan the QR code, right.
Community membership
If you have family, friends or colleagues who aren’t looking to be a full member at this present time but would like to be a part of our CGF community, they can join our charity as a free community member at childgrowthfoundation.org/register.
As part of our community membership they’ll receive our email communications and updates including a digital copy of this bi-annual CGF Newsletter emailed to their inbox.
Notice of our AGM
Join us at our virtual Annual General Meeting (AGM) at 7pm (GMT) on Monday 15th September 2025. At our AGM we’ll share important reflections and updates from the CGF as we report on the past year and look ahead to our upcoming plans for our charity.
Full, paid members of the CGF have voting powers at this meeting, with community members and non-members very welcome to attend as observers. The AGM will be held on Zoom to maximise the opportunity for attendance across the UK and for our international members to be able to join too. To register to attend for free please contact: events@childgrowthfoundation.org.
Renewing membership
Thank you so much to our members for your wonderful support. This support you provide through new or continued membership helps us deliver our range of services to families affected by rare growth conditions and those seeking a diagnosis, to support healthcare professionals, and to raise vital awareness.
There are a number of ways you can pay your membership:
By Standing Order
Account Name: Child Growth Foundation
Sort Code: 23 05 80
Account Number: 24218095
By card
Via our website: childgrowthfoundation.org/membership or scan the blue QR code, right.
By cheque
Please make cheques payable to: Child Growth Foundation and post to us at:
Child Growth Foundation, c/o Kinnair Associates Limited, Aston House, Redburn Road Newcastle upon Tyne NE5 1NB
By Direct Debit
You can set up a direct debit either by emailing: laura.roy@childgrowthfoundation.org, by using the following link: bit.ly/cgfdirectdebit or by scanning the yellow QR code, right.
For any queries regarding membership please contact: laura.roy@childgrowthfoundation.org.
Fabulous fundraising!
Thank you so much to supporter Caroline Buffett who raised over £1,100 for the CGF in the Cardiff Half Marathon - amazing!
December Star Challenge
Over £290 was raised through the December Star Challenge - fantastic!
Royal Parks Half
We have a team of five incredible supporters taking on this year’s Royal Parks Half Marathon in October to raise funds for the CGF.
Thank you!
We’re so grateful for fundraising, membership, donations and more from our community to support our charity's work, and the children, young people, adults, families and healthcare professionals we support.
Supporting our work
Join our weekly lottery from £1 a week and be in with a chance to win £25,000!
The CGF are part of Unity’s weekly lottery to offer our supporters the chance to win a £25,000 jackpot while supporting our work to improve the lives of children, young people, adults and families affected by child growth conditions.
The CGF Lottery is a weekly lottery costing £1 per entry, per week. The draw is run every Friday and each entry has the chance to win one of four amazing prizes, including the top prize of £25,000!
How to join our lottery
You can enter online using Direct Debit or debit card payment, or you download a PDF form to print out and post with your cheque payment to Unity Lottery’s Freepost address. You can also use the PDF form to join by Direct Debit or debit card payment.
For more information, including how it works. prizes and odds, and FAQs, plus to get the PDF form, visit our website at: childgrowthfoundation.org/lottery or scan the QR code, right.
If you need help with joining our lottery please call Unity on 0370 050 9240.
Free Will writing service
As a supporter of the CGF you’re eligible for a free Will with freewills.co.uk. With the freewills.co.uk award winning online service, you can make a free, legally-binding Will, checked, vetted and approved by a solicitor and which can be updated quickly and easily for free, forever.
When using this service there is no obligation to leave a gift to the CGF, but you may choose to, to make a lasting and positive contribution to our charity’s work.
We are registered with freewills.co.uk and there is a dedicated CGF page on their website at: freewills.co.uk/charity/childgrowthfoundation (or scan the QR code, right) with further information.
Leaving a lasting legacy
By making a Will you can ensure that your wishes, and the people and causes you care about, are provided for. After providing for your family and friends, remembering the CGF helps ensure we are are always here for the child growth community.
Every single gift is vital to the CGF and we appreciate any gift you may choose to leave us. It will not cost you a penny during your lifetime. It is simple to do and is free from inheritance tax.
All gifts, whatever their size make a real difference – it truly is a gift of a lifetime.
We see amazing fundraising ever year, including marathons and half marathons, ultra challenges, epic cycle rides, sponsored walks, raffles, cake sales…just to name a few! We are grateful for every penny raised. Together we keep supporting families wherever growth is a concern.
Anyone can get involved and join us in fundraising. Solo challenge? Family fundraising? Raising funds as a group of friends? Or workplace support? It’s all hugely appreciated!
Do something you enjoy, it’s not about the amount – any amount raised, no matter how big or small, is really appreciated. We are here to support you with your fundraising. We’d love to discuss any ideas you have, give you inspiration, or share your fundraising story with our community. We can also provide you with branded literature to use during your fundraising, along with supporting you in raising your funds for the CGF.
If you would like to discuss any ideas you have, activities you are interested in taking part in, or plans you have for organising raising funds, please get in touch with our friendly team at: fundraising@childgrowthfoundation.org or on 020 8798 2139. Visit the Get Involved section of our website at: childgrowthfoundation.org/get-involved or scan the yellow QR code, right, to find out more ways to get involved.
As an independent charity your fundraising is so important to us. It’s your kindness and dedication that enables the CGF to continue our work supporting children, young people, adults and families. The below quote perfectly sums up the impact your support of our charity has on the child growth community.
Top tips From parents, for parents
Dealing with comments about your child’s size
I tell them that my child has Growth Hormone Deficiency. That usually keeps people quiet.
I tell people how amazing, brave, smart and adventurous my child is, all the good things that I love about them.
I say what an interesting thing to say, we do not comment on children’s bodies.
It depends on what you are comfortable sharing. Explaining you don’t appreciate the comment usually works to prevent future comment. Solid sarcasm is entertaining and often completely shocks them!
My child has a rare growth condition, they are small but fierce (and may bite your knees!). Or I like to inform and educate the person.
I say my child is small and mighty.
I used to say everyone grows at different rates and he has a medical condition. I never wanted to give an exact diagnosis as my child did not want people knowing.
I say they have a rare form of dwarfism, they are very apologetic.
I say, I’d rather not discuss my child’s height, it’s impolite to talk about how people look. Or I just nod, and say yes they are small.
If you do not want to explain or discuss, change the subject and/or walk away.
Get in touch with our nurse led Support Line: w: childgrowthfoundation.org/supportline t: 020 8995 0257 e: support@childgrowthfoundation.org
From the child growth community Update on Emily
By Emily’s mum, Rachel
Russell-Silver syndrome (RSS)
Hi everyone! Many of you know me, I've been around a long time! As a trustee to the CGF for 20 years, I decided at the end of last year that it was the right time to stand down as trustee.
With Emily now nearly 23 years old and living in Edinburgh with her boyfriend, Nathan (who she met on that conservation trip to Mexico in Summer 2023), we tend not to think too much about RSS anymore. Emily manages her own health, which includes regular check-ups with the GP for any mental and physical health issues.
When Emily was born weighing 3lbs 3oz at 35+4 weeks, with severe Intrauterine Growth Restriction (IUGR) and then diagnosed with clinical RSS at 6 months due to lack of catch-up growth and many other symptoms, Dan and I entered a medical world of which we had no experience, no understanding, and which initially felt full of concern. It was before the days of broadband, so my first contact with CGF was a phone call and receiving a booklet about RSS and what (comparatively little) was known about it at the time - but the relief of speaking to Vreli Fry and then Jenny Child on the phone, and realising we were no longer on this journey alone, was just immense.
We attended our first CGF convention when Emily was 18 months old, and met so many amazing parents and kids, and I knew we'd be sticking around! How better to help learn and understand as much about Emily's condition, than to get involved in an organisation that helps bring together other people in the same boat, with experts who wanted to listen, learn and support too?
Emily was genetically diagnosed with RSS 11p15 LOM around age 6. Having been born under 0.4th centile in length and gradually making her own way up to 4th centile by age 4yrs, she weighed 11lbs aged 1, 13lbs age 2 and 16lbs age 3 yrs. As a family, we opted for GHT between ages 9-14yrs which helped with stamina and muscle tone, as well as helping bring about a fantastic final height of 5ft 2”. We’re a tall family, so Em’s genetic potential was around 75th centile, but making it to the 25th centile is great – she has no issues with driving, finding clothes or living a full and active life.
The early years were relatively complex with many eating issues, gut dysmotility, reflux, hyper mobility, hypo episodes and delayed physical milestones. There weren’t many weeks without some kind of appointment or check-up, however, Emily’s zest for life and resilient attitude have always helped keep a bounce in our steps.
The middle years were busy with lots of orthodontic work and orthotics to help with small (size 13/EUR 32) high arched feet, but Em adapted well and enjoyed school, Guide camps, Gang Show and Duke of Edinburgh and of course a healthy dose of Lego and Minecraft with her sister, Fran. Despite some struggles, particularly in the later teens with mental health issues, Emily persevered and attained welldeserved GCSEs and A levels, followed by a move to Leeds Uni to study Biology during Covid.
We celebrated her BSc graduation in July 2023 and last December, this was followed by an MSc graduation (MSc Biodiversity & Conservation, also at Leeds Uni). She’s currently job-hunting in Edinburgh while Nathan finishes his final year at Uni there and is keeping busy with voluntary work at the Scottish Collections Museum (in the insect department) as well as ecology work with The Conservation Volunteers and tutoring a student through their Geography A level. It's just amazing to see her so full of confidence and achieving so much in an area that makes her heart sing.
I hope this post really does help show - especially to those of you with younger kids - that any growth issues or health matters that our kids may have to cope with as they grow up, do not define them nor hold them back from leading a full life and finding their own way.
As a family, we've attended the CGF convention each year (apart from the Covid years and my mother-in-law’s 80th this year) and have become part of an amazing community we have loved and cherished along the way. The value of being with people going through the similar experiences is immeasurable, and the conventions are also a lot of fun –catching up with everyone, finding things in common outside of medical matters and watching the kids play together and forming their own friendships.
It’s been a highlight over the years for each of us – not just me in my role as trustee, but with Dan helping keep the IT bits running smoothly and both Emily and Fran helping to run stalls and sell raffle tickets. In recent years, Emily has enjoyed being part of speaker panels and I am sure we will all stay part of the event in the future – keep your eyes peeled!
As a trustee, I felt so lucky to be at the forefront of discussions about RSS as more became known about the condition, and to get to know the experts involved. I learned so much outside of my day job in children’s publishing.
I took up the opportunity to be a lay member on the NICE Guidelines for Faltering Growth, took part in a media broadcast about Growth Hormone adherence, visited pharma companies to help provide insight into the parent experience, participated in various fundraising endeavours and tried to keep up with technology whilst providing various incarnations of online peer support – currently via the CGF Facebook groups, but who knows what form they’ll take in the future!
Despite inevitable advances in technology, the benefit of human connection and mutual support still provides the strongest bonds, and it has been a real honour to sit alongside all staff and trustees, past and present, so full of passion and benevolence.
I'd encourage any of you who are reading this who might be wondering if they would like to get involved, please do! The CGF always welcomes applications for trustees, either those with specific skills who can help keep the trustee board robust, however, also those who want to give a small amount of time and dedication to a great cause - a voice of a parent or a young person who has gone through the journey of so many members will never be anything other than essential - and I can certainly vouch for how fulfilling it is. See you at the next convention!
Rachel,
Dan, Emily and Fran Pidcock rachel.pidcock@gmail.com
Q&A with Chelsea Wallace-Fletcher
Silver-Russell syndrome (SRS)
Q. Chelsea, can you tell us a bit about yourself?
A. I’m Chelsea, and I’m currently 18 years old, living in Adelaide, South Australia, with my parents and two younger sisters. At the age of 16 months, I was diagnosed with Silver-Russell Syndrome (SRS), a rare condition caused by maternal uniparental disomy 7 (MAT UPD7). This has shaped my journey in many ways. Right now, I’m in my final year of school, completing Year 12, and I’m excited about the next chapter as I work towards my goals. My experiences have taught me a lot about resilience and determination, and I’m looking forward to bringing that mindset into whatever opportunities come next.
Q. You first contacted the CGF last year and asked to interview us about SRS, can you tell us a bit more about this project?
A. Last year, I completed a research project for a school assignment where each student chose a topic that was either personal or of interest to them. I chose to focus on SRS because it’s a condition I live with and one that many people are unaware of. My goal was to deepen my understanding of SRS and raise awareness about it.
For my research, I used primary sources such as interviews and surveys. I reached out to my paediatric endocrinologist, Dr. Elaine Tham, at the Women’s and Children’s Hospital in Adelaide, to gather expert insights. The project spanned around sixteen weeks, during which I collected data, conducted interviews, and analysed the information for my final presentation and evaluation.
One of the most rewarding aspects of the project was joining SRS groups on Facebook. It allowed me to connect with others who share similar experiences, gain different perspectives, and relate to the challenges and questions they face. It was a meaningful way to combine research with personal reflection.
Q. In the piece you wrote, you talked about how SRS affected you as a child, can you tell us a bit more about how you remember it impacted your childhood?
A. From a very young age, SRS presented several challenges that shaped my childhood. One of the biggest issues was having a weak immune system, which led to frequent health problems and caused me to miss a lot of school and family time during my primary years. My height, a key characteristic of SRS, also played a big role. It often left me feeling excluded from physical activities, and there were times when I faced potential bullying, which affected my confidence.
I also remember struggling with everyday tasks, like reaching for things that were out of my height range, which made me feel different from my peers. Towards the end of primary school, these challenges were particularly tough, both physically and emotionally. However, looking back, I realise these experiences helped shape my resilience and gave me a stronger sense of determination to overcome obstacles.
Q. How does SRS affect daily life now?
A. While SRS still plays a role in my life, it doesn't affect me as much now as it did in the past. Over the years, I've learned practical ways to manage, like using a stool or climbing on the kitchen bench to reach things that are high up. More importantly, I've built a strong sense of self-esteem and resilience. I’ve come to a place where I no longer worry about what others think of me. I still receive support, particularly in subjects like English and Maths, which helps me succeed academically. I’m also fortunate to have an incredible support network around me, from family to friends, who I can rely on whenever I need to talk or seek advice.
Q. For your project, you interviewed different people from across the world who have SRS, what was that like?
A. For my project, I conducted a survey which I shared in various SRS support groups on Facebook. The responses came from people across the globe, including the United States, Latvia, Australia, Canada, England, Hungary, and the Czech Republic. While I didn't ask participants for their current age, I did collect data on the age when they were first diagnosed, and 82% of respondents reported being diagnosed between the ages of 0 and 3.
When looking at the symptoms people experienced before their diagnosis, most mentioned hypoglycaemia, but there were also common themes such as body asymmetry, Small for Gestational Age (SGA), and leg length discrepancies.
On a personal level, it was incredibly valuable to connect with others who have SRS. It was eyeopening to hear about the different challenges they faced, and it really reinforced how unique yet similar our experiences can be. It helped me gain a deeper understanding of the condition and also strengthened my sense of community with others who are going through similar journeys.
Q. You mentioned that from conducting your interviews and gathering the information that it depends on which country you live in as to what treatments are available. Can you tell us a bit more about that?
A. Through my research and interviews, I found that the treatment options for SRS can vary significantly depending on the country. For example, therapies like speech, physical, occupational, and psychosocial therapy are available in many countries, including the USA, Australia, and England.
However, the availability and access to these services can differ greatly. For instance, in some countries, treatments may be more readily accessible, while in others, there could be long wait times or higher costs involved.
Additionally, the cost of treatments can vary significantly depending on where you live and whether or not you have health insurance. In countries like the USA, where private health insurance plays a larger role, the costs can be very different from countries with universal healthcare systems like Australia or the UK.
It was eye-opening and, honestly, a little frustrating to hear how inconsistent care can be. It really highlighted how much depends on where you live, and how important it is to have access to the right resources and support.
I also found that the guidelines for managing SRS can differ from country to country, which means the approach to care and treatment is not always standardised, even for the same condition."
Q. In the conclusion of your work, you beautifully wrote:
Height is just a number. It’s our actions that truly measure our worth. Being informed about SRS has given me the confidence I needed to become who I am today, a strong, independent young woman.
Could you tell us a bit more about what you did to gain this strength and what you would recommend to others with a diagnosis of SRS to help them develop and gain the confidence and independence you have?
A. To me, gaining strength and confidence has been a journey of embracing who I am and not letting my challenges define me. I’ve learned that our mindset is incredibly powerful. Throughout my life, I’ve faced many obstacles, but each one has made me stronger and more resilient.
I’ve realised that our height, or any physical trait, doesn't determine our worth. It's the actions we take, the way we handle challenges, and how we treat others that truly defines us.
If I could go back and speak to my younger self, or to others with SRS, I would encourage them to be strong and not worry about what others think. We all have unique qualities that make us special, and those qualities are what make us the right fit for any opportunity or challenge.
Don’t focus on what others might say or how you might look compared to them. For instance, we might have a harder time finding clothes that fit, but that doesn't define our value. And let’s not forget, being smaller means we’re excellent at games like hide and seek!
What I’ve learned is that when people meet us for the first time, they remember our actions, not our height. So, my advice is simple: embrace your strengths, focus on what you can do, and never let anything hold you back from pursuing your dreams.
Update on Robert
By Robert’s dad, Steve
Growth Hormone Deficiency
Welcome to my Spring 2025 update. As I write this missive it is very cold outside and I suspect even colder where Robert lives in North Staffordshire. I say this because North Staffordshire is closer to the North Pole than Birmingham.
Robert has been alone with William for a few days as Emily has been away on army duties in Estonia (Emily is a Royal Engineers Reservist) so he has had a hectic few days balancing work and parenting, as no doubt most families do.
Work on the house continues apace with the recent completion of what will mostly be William’s play room with improved lighting and under floor heating. They did a lot of the prep work themselves and only used an electrician and plasterer where absolutely necessary. They are rightly very pleased with the result and the cost saving through their efforts. Robert continues with his daily jabs which he has had since he was one, so in March that will be 30 years.
Speaking of March, he and Emily will be welcoming a new addition to their family, as a brother or sister to William, so exciting (and tiring) times lie ahead. I can see even more hours spent in traffic on the M6 - such is life and it is so worth it!
Work wise Robert has been at Cushman & Wakefield for a year and is gradually assuming responsibility for the Lease Advisory department as the current senior is reducing his hours. He has been personally involved in recruiting staff who will work mainly for him. He is really settled there which, as a parent, is great to see.
William is progressing really well. His speech is incredible for his age, no doubt helped by nursery but also by parents & grandparents. He loves having books read to him and completing jigsaws, many of which say 4+ when he is less than 2.5 years old. He will put us all to shame, well me anyway…..
Social media takeovers
We have takeovers that are run on our various social media accounts to mark key awareness days and weeks, run by a fantastic range of individuals and organisations, alongside takeovers the CGF has run on other accounts to raise vital awareness. We add these takeovers to our website afterwards so you can catch up on any you missed, like the below:
Visit: childgrowthfoundation.org/social-media-takeovers or scan the QR code, right, to catch up on a range of information, insightful and inspiring takeovers.
‘Your genes are like instructions that tell your body what to do. They set your height, what you look like – all the things that make you, you.’
With bright, colourful illustrations and fun rhymes, My Sotos Story is a book for children, families and anyone who wants to learn about the genetic condition Sotos syndrome – what it is, how it happens, and what it’s like to live with.
Available to order on our online shop. Scan the QR code, right, or visit: childgrowthfoundation.org/my-sotos-story
Child Growth Foundation, c/o Kinnair Associates Limited, Aston House, Redburn Road, Newcastle upon Tyne NE5 1NB
Charity registered in England & Wales
Charity number: 1172807 | Company number: CE010204
