Caring Matters Now BIG Weekend 2023

An introduction to our BIG Weekend

From the 7th-9th of July we celebrated our BIG Weekend at Liddington PGL, Swindon, the last time we were able to do this was before the pandemic, in 2019. Due to the Cost-of-Living Crisis we thought carefully about how best to make this event accessible for members and were able to offer FREE places for both a child and adult with CMN. The guardian of our under 18 members also received a discounted place.

As a result of this, we saw more families attending this year’s event compared to our 2019 event! Families came along in smaller family units, with 74 family members attending alongside 36 of our members. Our group also included 9 adult members, 18 siblings and 20 dads! Knowing how foundational the previous PGL weekends had been in forming long-lasting friendships, we knew that this weekend would be special for the families who came along!

Members arrived throughout the Friday afternoon and upon arrival were given the key to their room to get settled in, as well as a welcome pack with lots of useful information about the programme for the weekend. Having dropped off their belongings, families socialised in the reception of the venue, introducing themselves to one another for the first time. We had a team of 11 volunteers helping us across the weekend, this number consisted of Support Contacts, friends of the charity and Trustees! As our guests socialised, our team finally had a chance to meet some of the faces behind the names and email addresses we are in contact with remotely. As our team mingled, our Support Contacts met families from their regions and shared stories.

Liddington PGL was a great venue for all that the BIG Weekend has to offer, providing grounds full of outdoor pursuit activities, family accommodation, a well catered canteen, lecture rooms, classrooms, and a common room which we used as our central meeting point. The common room gave us space to entertain our youngest 0–3-year-old members, display support literature and merchandise, as well as being home to a constant stream of tea and coffee!

We were assigned two PGL staff for the weekend, Theo, and Brie, who were absolutely fantastic! Nothing was too much for them, and they led every session with enthusiasm and a smile. When leaving, they shared how much they had enjoyed leading our group as they had never led a group “like ours” before!

Our members mingled organically, many recognising each other from previous support events, however 14 of the families who attended were attending an event with us for the first or second time! We even had a family join us all the way from Australia!

On site, there is a bar which is open for families until 9pm each evening, offering our members a great opportunity to relax and get to know one another, the children played pool and some of our adult members taught some of our younger members how to play darts! On Saturday evening we had planned for our Young Ambassadors to host some ball games after a campfire, however the rain had other ideas! It didn’t stop us from singing under umbrellas and toasting marshmallows though! It was so wet that some of our team members were still complaining of having wet shoes the next day! As per the tempo for the whole weekend, our PGL team Theo and Brie kept spirits high!

“Thanks for an AMAZING weekend! The kids didn’t want to leave & are still talking non-stop about it. Our daughter proudly held up her top & showed her kindergarten friends she went to an event “with people like me”.

– Parent of child with CMN. 

Throughout the BIG Weekend, Dads enjoyed social time in the evenings, getting involved in workshops and PGL activities. However, it was in the unplanned and unexpected places that our dads connected further- in the waiting room, walking from one activity to another and on our 0-3s treasure hunt, as they sang nursery rhymes! Since the BIG Weekend, a dad’s WhatsApp group has been formed and several dads signed up to take part in our Jurassic Coast Trek in September raising a phenomenal £14,221!

“I didn’t think about how many worries he had pushed down, he said he felt so much better after speaking to people and realising that our son is fine and will be ok. He said he felt so much better by just knowing that there are ways we can build him up and equip him for whatever may come. Before this weekend I think we all felt like outsiders watching our son try to navigate this on his own, but it’s been really empowering to know how we can support him, even if we can’t really understand.”

– Wife speaking about husband.

Our BIG Weekend was both an activity weekend and a conference. The program was carefully planned to give members and their families a choice as to the activities and workshops they participated in. Our guests were split into groups for 0-3s, 4-7s, 8-10s, 11-13s, 14-17s, 18+ years old, allowing our members to spend time with their peers! Adult members and parents also had the opportunity to take part in some activities throughout the weekend, rather than attend workshops. Each group participated in, fencing, climbing wall, the giant swing, vertical challenge, team building, survivor challenge and archery. The Survivor challenge and Giant Swing proved to be the most memorable! ‘Survivor’ required members and their peers to plan their camp, consider the weather, and share the tasks to build a shelter before time ran out. The Giant Swing was teamwork of another kind… members were harnessed into a three-seater swing before the rest of their group hauled them up to 10m high! Upon reaching their desired height, members pulled the release cord sending them hurtling down towards the ground before swinging up towards the sky! This is nothing like the swings you find at your local park. Some of our members were too little for these breath-taking activities, instead they had the opportunity to take part in a Sports Day, Treasure Hunt, music session, games, stories and colouring! Some with parents and others supervised by volunteers.

For those who wanted to keep their feet firmly on the ground, we had a full programme of workshops available which were influenced by the day-to-day support needs of our members. We were joined by Dr Ella Guest and Abbi Matthews from the Centre for Appearance Research (CAR), University of West England (UWE) Bristol and Morgan Zolkwer from Great Ormond Street Hospital, University College of London (UCL) who we commonly partner with in research projects.

Saturday morning kicked off with a Focus Group for our adult members focusing on what research and support would be most helpful for adults with CMN. Members highlighted that there seems to be two groups of adult members who have different needs. Firstly, young adults who have grown up through the charity, and secondly those who are a little older (50+) who have discovered and engaged with the charity in recent years.

This Focus Group was attended mostly by the second group, they voiced a shared need around self-esteem and thinking traps. Several members expressed that if support had of been available for them as teenagers, life would have been very different for them, particularly in navigating relationships and intimacy. The group concluded that support in open, constructive, and safe conversations about CMN would be helpful and that the opportunity to participate in skills-based training would be really helpful. As a charity we regularly share research opportunities with our members, in recent years some of our adult members have taken part in a project ran by Maia Thornton (CAR) around visible differences and intimacy. We are excited to learn from the podcast episodes produced in conclusion to this research, and for our adult support pathway and literature to be guided by its findings.  

Our members had the opportunity to meet Morgan Zolkwer, who works for Professor Kinsler, at Great Ormond Street Hospital, where he conducts his PhD, research into the psychological impacts of CMN. Our members often highlight a gap in the provision of psychological support available to those affected by CMN- physical health provision seems to be easier to access than psychological support. With this in mind, Morgan explored how family members can play a part in the psychological adjustment of somebody with CMN, describing resilience as elasticity rather than invincibility.’ Morgan suggested that one of the ways parents can do this is by helping their child to handle curiosity and challenge. Morgan continued, “…my job doesn’t exist because you need help, more because of societies flaws and intolerance to accepting difference.” By opening the floor to listen to our members and welcome their experiences, we were able to share ideas on how medical professionals could provide a ‘better first appointment,’ informing Morgan’s research and practice in clinic. You can listen to a podcast featuring Morgan as he discusses the ‘Impact of a Photoshoot on Perceptions of Birthmarks’ here.

Dr Ella Guest (UWE) from Centre for Appearance Research (CAR) invited our parent and child members between the ages of 8 and 17 years old to participate in an online survey to understand what it’s like to have CMN and what their support needs are. The aim of this research was to better understand both the experiences and support needs of children and young people with CMN, and their parents, to focus on the services provided by CAR. In this session Ella shared current findings and other projects which are members could get involved in. Research opportunities are shared with members via email as well as posting them in our closed Facebook groups.

Feedback from previous support events has shown that children, teens, and siblings enjoy our events, feel less isolated and more confident afterwards. However, these members also tell us that they do not feel more able to speak about CMN after an event. This interactive workshop hosted by Dr Ella Guest (UWE) and Miss Abbi Matthews (PhD at CAR) allowed the children, young people and siblings attending the BIG Weekend to creatively express their understanding of CMN, how they saw themselves, ways that they care for their skin and good things about having CMN. Our hope was that by doing this, it would increase our members ability to talk about CMN amongst friends and family.

As we walked around the room, it was a privilege to listen as our members and siblings described their posters. A child member learnt the full name for CMN for the first time, a teen member said they “haven’t done this before!” And a sibling described CMN as being “like the 7 wonders of the world, CMN is unique and amazing!” At the end of this session our young members had discovered good things linked to having CMN, even if they couldn’t see this to begin with! A common theme that came up time and time again was that being there at PGL, together, with others who had CMN was a good thing about having the condition!

“…he feels like he can talk about CMN better. My daughter also knows more and can explain it better.”

– Mum of child with CMN.

Parents often express an uncertainty in when to begin talking about CMN with their children, especially whenever their children are young. In this session, we reflected on the findings from the previous workshop with children and young people on ‘How to talk about CMN’ (see section 6) and discussed the following questions:

Should we talk about CMN if our children haven’t noticed it yet?
Is it ever too early to talk about CMN openly with our children?
How can learning how to talk about CMN impact children and young people as they grow up?

During this session we also talked about having those more difficult conversations, for example understanding the importance of sun cream. We concluded that conversations should be child led, according to the child’s own development, life experience and understanding. Dr Ella Guest (UWE) and Miss Abbi Matthews (PhD at CAR) shared a recent resource which has been developed by Maia Thornton at CAR, the Parent’s toolkit, and asked members to participate in research by reviewing the resource.

“I found the transition information letter was really helpful when my child went to Secondary School. The school medical form was not designed for a condition like CMN. I was able to attach the letter and know all the information they needed to know was there. The links would mean that if they wanted more information, it was easily accessible.”

– Parent of 11-year-old member

Five of our Young Ambassadors attended the BIG Weekend, we had hoped that they would be able to facilitate a game of football on the Saturday evening, however the rain had other plans! Throughout the weekend, our Young Ambassadors mingled with families and friends they have made throughout the years as well as having the opportunity to meet new families! Seeing teens with CMN at our events is important for our younger members who look up to them as role models. Following the BIG Weekend, we also had a new Young Ambassador sign up! 

Click here to read Anna Goddard’s Personal Story.

Members were invited to this conversational session led by Hannah Cree, our Support Pathway Practitioner and Val Unsworth Chair of Trustees. We invited an adult member and a parent to share their perspectives as we considered how best to meet the needs of siblings whilst supporting our child with CMN. Hannah reflected that ‘Children have unique needs for many reasons and there may be needs within your household which are bigger than CMN! Or maybe CMN is the thing in your household that gets most of the attention.’ She suggested that there is a balance to be sought in being able to talk openly with your child about CMN whilst not wanting the parent- child or sibling relationships to be solely about their condition. We shared the observations that whilst siblings are often a child with CMN’s biggest cheerleaders and that most of the time members report only positive relationships with siblings, this doesn’t stop parents from feeling guilty at times, or doubting themselves as parents. Val reflected that right now you may not see the benefits for siblings, however growing up with a sibling with CMN may shape them for the better, as siblings gain a wealth of experience and skills which equip them for life. Our adult member beautifully reflected her experience that “siblings go the whole way”, “are the closest people to me, so I don’t have to explain it,” and are “peer groups in the outside world.” We reminded our members that Caring Matters Now very purposefully plans events to include siblings and are interested in gathering sibling feedback!

An adult member beautifully reflected her experience that “siblings go the whole way,” “are the closest people to me, so I don’t have to explain it,” and are “peer groups in the outside world.”

Val and Joe Unsworth shared their ‘Learning along the way’ at each life stage, as their daughter Jodi Whitehouse progressed through childhood into adulthood with CMN. Joe opened the session by sharing their experience in hospital whenever Jodi was born, and the challenges that came once they brough Jodi home. Val and Joe spoke about their roles as Mum and Dad, and that ‘being different got them through’ especially in those early days as they learnt to manage life with CMN together. Val echoed Morgan Zolkwer’s advice (see section 4) in building resilience through child led open communication from an early age.

As Jodi listened from the back of the lecture theatre, Val shared that children are often blissfully unaware of the big milestones that we worry about as parents, and that more than not people saw past Jodi’s visible difference due to her strength of personality and character.

“I think the biggest take we have from that was listening to Val tell stories of Jodi’s siblings and how CMN has impacted them in a positive way. It makes us very hopeful that our boys will grow up with a lot more empathy for people who are different and despite worrying that we have spent a lot of time caring for our child with CMN in the early years, the boys will be ok and perhaps positively impacted.”

– Mum of child with CMN

During this session, we had the privilege of hosting an annual research update from Professor Veronica Kinsler, world leading specialist in CMN. This session was open for members to join virtually and also included a Q&A session. Since then, Professor Kinsler has shared a research update with us, which includes access to her team’s most recent research paper. 

“In terms of research, this event was a huge eye opener to what is going on in Great Ormond Street. We are not yet linked in with Great Ormond Street and Alfie is seen by our local dermatology department. During each check-up we get asked how we feel about surgery and whether this is a route we are looking at. We had no idea, until PGL, that there is active research and huge strides being made in the direction of treatment that is not limited to surgery.”

– Mum of child with CMN.


As the weekend came to an end, we gathered together between rain showers for a group photograph! Child and adult members alike shared such a sense of pride to be together sharing their unique experiences with CMN. One child said they were “Proud and excited” to have CMN and members left asking “when we can do it again?” So… watch this space!

BIG Weekend Photo Gallery