We have the opportunity to take part in the 2025 Royal Parks Half Marathon and we would love you to join Team Sandcastle for this...
Our Mission
The Sandcastle Trust’s mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition. Our services help to build positive family memories, strengthen family relationships, reduce isolation and improve resilience.
We also increase public awareness of the inequalities and barriers to emotional health and wellbeing that families living with rare genetic conditions face and affect positive change through our work.
How We Help
There are approximately 6,000 diagnosed genetic conditions. Each affects less than 0.1% of the UK’s population, but together they are one of the greatest causes of disability and early death and affect the lives of 3 million people in the UK (source: National Human Genome Research Institute). Many are life limiting, all are life-changing.
Significant challenges to positive emotional health and wellbeing are likely to present themselves to individuals diagnosed with a rare genetic condition and their family members. The Sandcastle Trust walks alongside families living with a rare genetic condition offering a range of impactful emotional health and well-being initiatives.
Get Involved
Become part of Team Sandcastle and raise money to help us support families affected by rare genetic conditions.
Upcoming Events
The London Landmarks Half Marathon 2025
The London Landmarks Half Marathon is back for its fourth year! We would love you to join Team Sandcastle for this event! Please email us at info@sandcastletrust.org to register your interest.
Latest News
New Counselling Service
The Sandcastle Trust is pleased to be working in partnership with Rareminds to offer a new free, confidential counselling service for individuals/couples aged 18+ living with or caring for a family member with a rare genetic condition. Six to twelve sessions can be provided either via Zoom or by telephone. Both evening and daytime appointments are available (weekdays only). Our…
The Sandcastle Trust welcomes new trustee
My name is Jess. I worked as a paediatric nurse for 20 years and I’m a mummy to three wonderful children: Daisy, Lola and Alfie. Sadly, both Lola and Alfie were born with the same ultra rare genetic condition called CRELD1. Lola, my second daughter, started having seizures at three months old. As a paediatric nurse I knew seizures starting…
The Sandcastle Trust launches 2023 Summer Sandcastle Memories Appeal
Did you know that Saturday 5 August is National Sandcastle Day? No? We had no idea it existed either, but we were very excited when we found out that it did and thought what better day to launch our 2023 Summer Appeal! Few childhood memories are looked back upon more fondly than building sandcastles with much-loved friends and family on…
“I just wanted to say a huge thank you for supporting us with a family getaway to Alton Towers last week! We had such an amazing time and made so many memories for us all, particularly Zach. The CBeebies hotel was out of this world and certainly impressed Zach who had daily meet and greets with his favourite characters, discos and entertainment at night and all the interactive fun in between. Alton Towers was brilliant too and Zach loved CBeebies Land and his big sister Lexi loved some of the more grown up thrill rides in the park. Having the hotel on site was invaluable to our trip as it allowed Zach to return back to the room for some downtime when he was either tired or became too overwhelmed with the park, this allowed Lexi to stay with one of us and carry on the fun. Normally she would have had to stop what we were doing and leave to accommodate Zachs needs, so she was delighted to be able to carry on the fun which would not normally be possible.
The hotel and staff at the park were very accommodating of Zachs needs, including providing access passes to limit queue times, make the rides accessible for his wheelchair and even allowed us to swap our splash landings water park and our 2nd park day tickets around to allow Zach some time to recover as he was very tired physically and emotionally after the 1st day in the park. As part of Zachs genetic condition, Dup15q11.2, he suffers from hyper mobility and tires very easily so uses a wheelchair at times as he is unable to walk any distance. He is also under diagnosis for Autism/ADHD so struggles emotionally in different environments and is extremely sensory.
The break away as a family has been so great, being able to spend quality fun time together means the world to us as parents and makes the more challenging of aspects of life navigating Zachs conditions much more bearable for us all. “
#SandcastleTrust #raregeneticcondition
Wishing the very best of luck to our wonderful Chair of Trustees, Sam who is running the @royalparkshalf tomorrow to raise vital funds for The Sandcastle Trust 🏃♀️🏃♀️🏃♀️ If you would like to contribute to Sam’s fundraising page you donate here 👉https://sandcastletrust.enthuse.com/pf/samantha-crouch
@littlepickle12
8 year old Charlie lives with a rare genetic condition called MECP2 duplication syndrome. In September he and his family enjoyed a Sandcastle Memory respite break in an accessible lodge in beautiful Cornwall. This break was donated by one of our corporate supporters, @disabled_holidays and we cannot thank them enough and all the wonderful accessible property owners who choose to donate breaks to us for the benefit of families living with a rare genetic condition 🧡
Living with a rare genetic condition or caring for a family member that does is emotionally challenging. Fighting for services, managing extra costs, carer burnout, experiencing stigma and prejudice as well as coming to terms with life being different from how we expected can all take their toll on our mental health. This #mentalhealthawarenessday we want to remind all our Sandcastle Families, if you are struggling please reach out to our free counselling service: https://sandcastletrust.org/how-we-support/counselling-service/
The Sandcastle Trust’s mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition. Our services help to build positive family memories, strengthen family relationships, reduce isolation and improve resilience.
You can find out more about the support we offer on our website: https://sandcastletrust.org/how-we-support/ (Link in bio).
There’s a free and easy way to support The Sandcastle Trust from home, and it starts with easyfundraising!
Turn your online shopping at over 8,000 retailers into free donations. All your favourite retailers are available to shop with, so why not sign up?
Plus, every new supporter is a chance for us to win one of ten £300 donations! Not only that, but when you go on to raise £5, easyfundraising will double it.
Join today here: https://join.easyfundraising.org.uk/sandcastletrust/8WTNCT/c2s/WxJvtxI9/CE969/facebook/ (Link in our Linktree).
Despite being a very small charity, The Sandcastle Trust works to support families living with the challenges of a rare genetic condition throughout the UK. We recently supported Zoe and her family from Northern Ireland:
“Thank you so much for enabling and funding our family getaway in July. We had a three night stay in a beautiful hotel and a two day pass to a theme park in southern Ireland.
Zoe has a rare chromosome microdeletion 1q42.3 - q44 and has most recently been diagnosed with epilepsy. This effects Zoe developmentally, both physically and mentally and she is Ng tube fed. She requires constant supervision and care. Because of this we sometimes find ourselves pulled in different directions between our two children. Zoe is 3 and has an older sister, Lauren, who is 7. When planning trips away or any events, we need to make sure we have everything at a hand to help Zoe and ensure she doesn`t get overly stimulated or overwhelmed, whilst ensuring Lauren is having a good time and not missing out on anything fun. Lauren is the most caring and understanding big sister but sometimes we can`t do as many things as we wish with her.
We are so thankful that The Sandcastle Trust enabled us to have a brilliant family holiday and enabled us to spend time both together and separately doing the things that both children love. The hotel had a pool and Lauren was swimming each day, there was a sensory room we could take Zoe too and the two days theme park pass meant we didn`t have to rush around, and we could leave and come back if it got too much for Zoe.”
#SandcastleMemories #raregeneticcondition #rarechromosomedisorder #familyrespite #familiesmatter
The Sandcastle Trust Lottery! Sign up today ⭐ From only £1 a week to play, you will be helping our work supporting families living with a rare genetic condition to continue, as well as having a chance to win up to an amazing £25,000!
You can sign up here: 👇https://allweatherslottery.com/sandcastle-trust/ (link also in bio)
Please share this post with your friends and family and comment below to let us know if you sign up! Thank you 😊
🌞 Seaside holidays are the stuff of dreams - sand between your toes, waves in the distance, and memories that last a lifetime. Thanks to our amazing supporters, we’ve got a two accessible caravans ready to give families facing the challenges of living with a rare genetic condition a much-needed break by the sea. But here’s the catch: we need £10,000 a year to keep each of them running. Let’s make sure these magical moments never have to stop. 🌊🏖️
Help us keep the smiles coming ➡️ Donate Here 🌟 https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024
#SandcastleTrust #SeasideSanctuary #FamilyMemories #KeepTheMagicAlive
🌊 Make waves in more ways than one! Our new merch collection with Teemill is here, blending style, sustainability, and support. Every item is made from organic, eco-friendly materials and printed in a factory powered by renewable energy. Plus, with each purchase, a donation goes straight to The Sandcastle Trust, helping families create cherished memories by the sea. Look great, feel even better—because fashion should care. 🌟👚
Shop with purpose today ➡️ the-sandcastle-trust.teemill.com (Link in our Linktree).
#SustainableFashion #ShopForGood #SandcastleTrust #Teemill #EcoFriendlyWardrobe
🌞 There’s nothing quite like the magic of a seaside holiday, especially when life has been throwing you stormy weather. Thanks to you, we’ve now secured a second accessible caravan where families dealing with serious illness as a result of a rare genetic condition can find a bit of peace and joy. But to keep this escape available year after year, we need £10,000 annually for running costs. Imagine the smiles, the laughter, the pure joy that your support can sustain. 🏖️
Be a part of these ongoing moments of happiness. Every donation counts in keeping the magic alive. Please consider donating today ➡️ https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024
#SandcastleTrust #KeepTheJoyFlowing #FamilyTime #SeasideMagic
🌞 Ready to refresh your wardrobe and make a difference? Our new collab with Teemill brings you stylish, sustainable merch that’s as good for the planet as it is for your soul. Each piece is crafted from organic fabrics, printed with renewable energy, and includes a donation to The Sandcastle Trust. So every time you wear it, you’re spreading a little more kindness in the world. Fashion with heart—what’s not to love? 💚
Join the movement and shop the collection today ➡️ the-sandcastle-trust.teemill.com (Link in our Linktree).
#EcoFashion #WearYourSupport #SustainableStyle #SandcastleTrust #Teemill
🌞 Imagine this: toes in the sand, the sound of waves gently lapping at the shore, and the biggest grins on little faces. Thanks to your amazing support, we’ve now secured a second accessible caravan that will give families living with a rare genetic condition the chance to create unforgettable memories by the sea. But we need your help to keep the sunshine rolling! We’re raising £10,000 to cover its annual running costs, so families can continue enjoying these precious moments. Because everyone deserves a slice of seaside magic. 🌊🏖️
Help us keep this dream alive ➡️ https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024 🌟 (Link in our Linktree).
#SandcastleTrust #MakeMemories #RespiteHolidays #KeepTheMagicGoing
🌍 Look good, feel even better! Our brand-new sustainable merch collection with Teemill isn’t just about looking fab - it’s about doing something amazing too. Each item is made from organic materials and printed using renewable energy, so you can strut your stuff knowing you’re being kind to the planet. And here’s the best bit: every purchase comes with a donation to The Sandcastle Trust, helping families in need. It’s a win for your wardrobe and the world. 🌱👕
Shop now and wear your support ➡️ the-sandcastle-trust.teemill.com (link also in our Linktree)
#LookGoodDoGood #SustainableFashion #SandcastleTrust #Teemill #EcoFriendlyFashion
** Late Summer Sandcastle Caravans Availability** Do you live with or care for somebody with a rare genetic condition and are not restricted to school holiday dates? Our Sandcastle Trust caravans on the Brynteg Country and Leisure Retreat in North Wales and the Southview Holiday Park in Skegness have some limited availability left in September and October for one week or long weekend breaks. The caravans have two bedrooms, an accessible wet room and ramped access. Breaks are free (including passes) for families who have not had a Sandcastle Memory break before. For those that have already had a free break, you can rent our caravans for a heavily subsidized rate. Please email us at info@sandcastletrust.org if you would like to apply and we will send you an application.
3 year old Eddie lives with a rare genetic condition called Diamond Blackfan Anaemia, which means he makes no red blood cells himself. As a result, he has to go to hospital at least every 3 weeks for a blood transfusion and has subcutaneous infusion every night for at least 8 hours to remove excess iron from his body due to the blood transfusions. Eddie and his family recently had a enjoyed a break in our Sandcastle caravan in Skegness:
“Thank you so much for our stay. We all had a lovely time and loved the caravan and park. A highlight was definitely the swimming pool and Eddie loved playing on the beach in Skegness.”
You can find out more about our Sandcastle Memories Family Respite Service for families living with a rare genetic condition on our website here: https://sandcastletrust.org/how-we-support/sandcastle-memories/
11 year old Marley lives with the rare genetic condition Prader Willi Syndrome. He and his family recently enjoyed a family respite break at our Sandcastle caravan in Skegness:
“We just wanted to say thankyou so much again. The break was honestly amazing from start to finish.
Marley thrived and gave everything a go. We got one of the activity passes so he could at least give everything a try. We saw him do things he would never even try in the past. The team there were amazing with him. He only made it up the steps on the high ropes and a couple of minutes in the zorb, but he gave them his best shot. We were so proud of him. He absolutely loved the caravan. And how open plan it was made it so much easier and we didn’t have any bumps and falls. Which is amazing for him.”
The Sandcastle Trust’s mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition. Our services help to build positive family memories, strengthen family relationships, reduce isolation and improve resilience.
You can find out more about the support we offer on our website: https://sandcastletrust.org/how-we-support/ (link in bio).
A little tour of our new Sandcastle caravan at @brynteg_retreat in North Wales all ready for its first guests this summer ☀️ We do not have a hoist, changing bench or shower chair in this caravan but all can be hired locally and delivered prior to a stay. Family respite breaks are just one of the services we offer to families living with a rare genetic condition. You can register to access our services on our website here 👉 https://sandcastletrust.org/how-we-support/register-as-a-sandcastle-family/
Our free, confidential counselling service is available for anyone 18+ based in the UK who is impacted by a rare genetic condition. You may have a diagnosis yourself or care for a loved one that does. We can also provide couples counselling via this service. 6 - 12 sessions can be provided free of charge, either via Zoom, or by telephone with both evening and daytime appointments available.
The Sandcastle Trust’s Counselling Team are all experienced therapists who have undertaken additional training in Counselling for rare genetic conditions. The Sandcastle Trust’s Counsellors provide a safe, confidential relationship to work through difficult thoughts or feelings, think about options that are open to you, and explore new ways of approaching challenges you are facing. Sessions are currently available.
If you would like to arrange an Initial Consultation, please contact Lead Counsellor (David) on david@rareminds.org marking your email ‘The Sandcastle Trust Counselling’.
More information is available on our website: https://sandcastletrust.org/how-we-support/counselling-service/ (link also in our Linktree).
Our Story
“Our family’s experience is where the idea of The Sandcastle Trust came from. We hope to help other families like ours who are affected by rare genetic conditions create positive family memories”
Danielle Singleton
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Louie’s Story
"Louie taught me so much during his life and how to truly love and care for someone. I will miss him every day for the rest of my life."
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Ruairi’s story
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Ivan’s story
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Elijah’s story
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Tabby’s Story
"Tabby does not really play with toys, she needs 1:1 supervision and does not play independently. She hates being cooped up indoors and loves to be outside whatever the weather. She has found this winter lockdown particularly hard."
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Sam’s Story
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Eddie’s Story
“It was really easy to apply to the Sandcastle Trust and they were so lovely to deal with. The whole process removed any stress – which is brilliant when you are looking after a profoundly disabled child.”
Ilmarie Braun, Eddie's Mum
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Kirsten’s story
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Maddison’s Story
“It was the most memorable couple of days. It was time away when could we feel like a “normal” family - we could forget the medical side of our lives and the constant fighting for Maddison.
“We felt so grateful the children could experience London and have fun.”
Lidia Sherwood, Maddison's Mum
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Contact Us:
0207 1998 261
info@sandcastletrust.org
Registered Charity No. 1169523.
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