ISG Residential Camps 2023

What fun we have had this year, we have completed two camps in Osmington Bay, Dorset  and Caythorpe Court, Lincolnshire attended by children from all over the UK, travelling as far afield as Scotland!

We usually hold camps in the summer months as this is the most accessible time for families to plan and for children to attend.  However, as the ISG held its annual conference in September, which included a camp taster day, we decided to hold the second camp in October to enable those wanting to see what camps are about to sign up to a full weekend.

We were lucky with the weather at both camps where temperatures remained comfortable and the rain stayed away!  This is not always the case but we are always prepared and adapt the weekend to suit the weather.

Children began arriving on the Friday in anticipation of what the weekend would bring.  Many were nervous as they had not been to an ISG camp or event before and did not know the other children but parents stayed a short while to settle the children into their rooms.  There is always a scramble for the best bed in the room, top bunks are usually grabbed first, but with 4-6 beds in each room most are happy with their choice.  Once the important allocation of beds was made the parents departed for a few days (some had booked themselves a short break in local hotels) with goodie bags in hand, provided by the ISG including samples from pharmaceutical companies.

The children were excited when they also received their goodie bag packed full of essentials for the weekend; Water bottle, torch, notepad, fidget toys, activities, snacks and sweets….lots of sweets, or as we refer to them ‘essential fuel’ for the weekend!

Once the beds were chosen, goodie bags explored and bags unpacked the children headed off for a tour of PGL, intrigued by the activities and what they would entail.  The weekends included activities such as abseiling, survivor, climbing, giant swing, zip wire, archery, street surfing, buggy building, riffle shooting and aeroball; as you can see there is something for everyone included in the programme.  The children could not wait for Saturday morning to arrive to get into their groups and head out to the activities.  After the tour of the activities and some safety information the children made their way to the PGL restaurant where they were presented with a huge choice of meal options catering for all dietary needs and requirements.  The choices were so vast the children had difficulty in deciding what to try first and enjoyed helping themselves to the salad cart. Dinner was followed by some music and activities around a campfire where toasted marshmallows were a plenty and then it was time for bed ready for an early start.

Saturday and Sunday mornings started with a choice of cooked breakfast, cereals, fruit and yoghurt before heading out for the day in our activity groups.  By now the children had begun bonding and making friends and were excited for the days ahead.  The children were all fantastic, trying new and sometimes challenging things whilst providing support and encouragement to each other, it was lovely to see how connected they all were.  A break at lunchtime was a chance to refuel and visit the much awaited PGL shop to spend their £10 before heading back to activities for the afternoon.

The evenings provided time for the children to chat and share their experiences whilst at camp, there was even chat about the different creams and routines the children do to manage their ichthyosis.  Some listened intently while others were more willing to share experiences about their ichthyosis, which was very informative and interesting to see how well the children engaged.

On Sunday evening after dinner, and another full day of activities, the children prepared to leave camp and be collected by their parents.  There were excited faces from children and parents ready to share and hear about the weekend, which was very emotional as children also had to say goodbye to their new friends.  However, with technology, social media and old fashioned pen and paper the children were able to stay connected once they had left, many children have been friends for some years following an ISG camp and stay in touch to this day.

The ISG started running these camps in 2014 with a generous grant from Jeans for Genes for the first pilot camp and they have been a huge success ever since.  The idea came about as it was identified there was a need for children to interact and meet others with ichthyosis, lessening the feelings of isolation.  Although children meet at ISG conferences and Family Days we noticed, along with feedback from parents, that there was not enough time for children to bond and form friendships during these events.  The ISG has now held 14 camps across the UK in Surrey, Lincolnshire, Lancashire, Shropshire, Wiltshire and Dorset attended by more than 200 children!  After a lot of research and investigation we decided that PGL were by far the most suitable venues to hold our camps and they have proven themselves going above and beyond to accommodate our needs.

Every year we invite children aged 8 years to 16 years affected by ichthyosis to attend a residential camp.  This may be the child has the condition themselves or a sibling, parent or family member with ichthyosis.   We understand the possible anxieties for parents and children when considering joining a camp and so we always encouraged the children to bring a friend or sibling for support.  The ISG aim’s to reach as many young people as we can, offering them this fantastic opportunity designed to be exciting and fun whilst encouraging social interaction, promoting personal development and increasing confidence and self-esteem.

During the last 9 years we have seen many children join in the fun at the camps and many of them were disappointed they are now too old.  We do not want to see children (or adults) disappointed, neither do we want to exclude anyone from the benefits these camps bring and so we encourage, and invite, the young people that attended as children to volunteer as adults. The young adults help to guide and mentor the younger ones and help prepare them as they grow into adulthood, sharing their experiences of living with ichthyosis helping to create a support network within the young ichthyosis community.

These camps give children the opportunity to socially interact and make new friendships with other people of a similar age also affected by the condition. This is often a rare opportunity for children to be able to spend time with other children, share experiences and to be children without worrying how others perceive them because of their differences. We have seen firsthand the difference the camps make to children; increasing confidence, having a positive effect on self-esteem, personal development and general wellbeing. The experience helps children to embrace their condition and empower them to manage their own treatment and care independently.  Attending a camp independently form their parents provides an opportunity for children to take control of their own care, helping them to cope with the lifelong condition and preparing them for challenging situations; giving them the confidence to deal with them.

We don’t charge families for children to attend the camps as we want to provide the same opportunities for all children affected by ichthyosis and we are able to fund them through the generosity of donations, fundraising and grants.  When children register all we ask is a £10 deposit to secure a place which is then given back to the children at the camp to spend in the PGL shop.

We are currently in the process of organising camps for 2024 across the UK.  The ISG also has events planned in Ireland and Scotland next year so please look out for further information.

If you would like more information or your children are considering attending an ISG camp in the future please get in touch [email protected]

 Don't just take our word for it, here is what our members have said!

“I enjoyed making new friends affected by ichthyosis because we shared experiences” - Child

“He has come back so much more confident and says it’s nice to feel like you fit in” - Parent

“A fantastic experience for my son and all the children that deal with ichthyosis on a daily basis.  Every child should experience this, thank you to those for organizing” - Parent

“Would just like to say thank you so much to everyone who organised the summer camp. He has had a brilliant time and he loved every minute of it. I am so grateful that you have put something like this on for the children. It really is a great opportunity for them to meet other sufferers and realise they are not alone in this.  A massive thank you to all involved.” - Parent

“We wanted to say a big THANK YOU to you and everyone else at ISG and your supporters for camp.  She had a fabulous time and felt it really helped with her confidence. She made some good friends and wants to thank you both for making her feel so welcome and for your infectious enthusiasm.  She is already looking forward to seeing everyone next year!” - Parent

“These camps are the best thing the ISG does!” - Parent

“Making new friends at the camp was important to me because I can now keep in touch with other people that have ichthyosis” – Child

“He was going to stay for half an hour then phone me now he’s asking when the next one is!” – Parent

“I didn’t really want to come to the camp because I thought it would be boring but it was really fun and exciting and I made new friends” – Child

“Seeing the children interact, try new activities and confide in one another was fantastic.  All the children were affected by ichthyosis but at different levels yet the camp suited all of them.  Seeing the difference just a few days together made to each and every one of the children was truly inspirational” - Adult volunteer


ISG Camp Team & Volunteers

Bobby Tadd – Youth Volunteer, ISG member; Liz Dale – ISG Operations Manager, Children’s activity Co-ordinator, Camp leader; Rachel Barker – Adult Volunteer, ISG member;  Sarah Griffiths – ISG Trustee, Children’s activity Co-ordinator, Camp Leader.

Pharmaceutical Support

Alliance Pharma (Hydromol); Ego Pharmaceuticals (QV Skincare); Molnlycke (Epaderm);