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 event! This stunning central London Half Marathon, takes in some of the capital's world-famous landmarks…
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.
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…
🎄✨Christmas Countdown Appeal - Day 4: Meet Aoife, a miracle girl ✨🎄
Today, the 4th day of our Christmas Countdown Appeal coincides with PKS Awareness Day which shines a light on Pallister-Killian Syndrome (PKS), an incredibly rare genetic condition affecting fewer than 500 people worldwide. 🌍
As part of this, we’d love you to meet someone very special. World, meet Aoife.
Aoife, from Northern Ireland, is one in 15.4 million—yes, you read that right! 💕 At just 2 ½ years old, she’s already shown the world what it means to be a true fighter. Her journey has been one of bravery, resilience, and love. Despite countless challenges—serious respiratory infections, epilepsy, surgeries, and even sepsis—Aoife never stops smiling. ✨
Aoife’s mum says “We were completely heartbroken to receive the PKS diagnosis and struggled with the uncertainty that lay ahead. We face many challenges on a daily basis, but we are trying so hard to learn this new way of living and making Aoife’s life the best possible: we are so lucky we get to love Aoife she brings so much joy and happiness into our home. We are so thankful to have found @SandcastleTrust. They have helped us create so many magical memories with our girl that will last forever, a short holiday and special days out at Christmas. The support they have offered our family has been unbelievable and we are so thankful for this community.”
Let’s come together to raise awareness for PKS, celebrate the strength of families like Aoife’s, and spread some hope for all families living with the challenges of a rare genetic condition. 💙
📢 Rare, but never alone.
📸 Thank you to Aoife’s mum for creating this lovely video for us to share. Comment with 💖 to send love to Aoife and her family.
👉 Make a donation to our Countdown Christmas Appeal and help us create magical moments and support the emotional wellbeing of more families living with the challenges of a rare genetic condition: https://sandcastletrust.enthuse.com/cf/sandcastle-trust-christmas-appeal-2024 (link also in our bio)
#PKSAwarenessDay #PKSWarrior #Rare #genetic #sandcastletrust
✨Christmas Countdown Appeal - Day 3: We Need Your Vote! ✨
Today, on day 3 of our Countdown Appeal, we are asking for your vote! Do you remember Ollie and Amelia who we introduced you to in our Christmas Appeal film last year? Well, that film is a nominee in this year’s Smiley Charity Film Awards @SmileyCFA – the Oscars of charity film! Just a few clicks and your vote will help us get to the next stage. It’s completely free and takes moments. Please encourage all your friends and family to vote for us too – this is a great opportunity to raise the profile of our small charity and our work supporting the emotional wellbeing and resilience of families living with rare genetic conditions. Thank you! Vote here: https://smileycharityfilmawards.com/films/ollie-and-amelia-the-sandcastle-trust-christmas-appeal #charityfilmawards #cfa25
✨Christmas Countdown Appeal - Day 2: The Story Behind The Sandcastle Trust ✨
My name is Dave, and 8 years ago, my wife, Danielle, and I started The Sandcastle Trust.
Aged 28, I was diagnosed with a very rare genetic condition. I had been experiencing problems walking for a couple of years, but naively thought it was something simple, like a slipped disc. As it became clear that it was more serious, I found myself on what is often called a “diagnostic odyssey” – a long battle to get a definitive diagnosis. I have since learned, this journey is common for those diagnosed with rare conditions.
Despite the growing severity of my symptoms, we were completely blindsided when the diagnosis came: a rare, potentially life-limiting, inherited condition called Adrenomyeloneuropathy. The consultant seemed just as surprised – having never encountered a case before, he Googled the condition in front of us!
The diagnosis was overwhelming. Regular hospital appointments became a way of life for me. We were both isolated, scared and received very little emotional support to help us navigate the challenges we found ourselves experiencing over the next few years, like adjusting to using a wheelchair and going through the gruelling rollercoaster of PGD IVF to become parents to our twin boys, without passing the condition on. Unsurprisingly, all of this took a significant toll on our mental health.
It was from these experiences that The Sandcastle Trust began to take shape. We started small-scale fundraising to offer special days out for families like ours, affected by rare genetic conditions. It gave us a positive focus when we were struggling to come to terms with my diagnosis. However, over the years, with the help and guidance of a dedicated board of trustees, The Sandcastle Trust has grown into an established charity providing a range of impactful services that support the emotional wellbeing of families in the rare genetic condition community.
Please donate to The Sandcastle Trust’s Christmas Appeal if you can. The demand for our services is huge, and every penny will make a difference.
Thank you,
Dave 😎👨🦽
https://sandcastletrust.enthuse.com/cf/sandcastle-trust-christmas
🎄✨ Christmas Countdown Appeal - Day 1 ✨🎄
Meet Samuel and his amazing family, who perfectly capture why your support for The Sandcastle Trust is so vital 💛. Through your generosity, we can continue creating magical memories for families living with rare genetic conditions. 🏖️👨👩👧👦
🎥 Please watch Samuel`s heartfelt story as told by his mummy and make a donation to our Christmas Countdown Appeal if you can. Every donation makes a difference, bringing joy and support to families when they need it most.
💫 Let’s make this season truly special: https://sandcastletrust.enthuse.com/cf/sandcastle-trust-christmas-appeal-2024 [link also in bio]
Together, we can light up lives this Christmas 🌟. Thank you for being part of our story.
#ChristmasCountdown 🎅 #MakeMemoriesMatter 💖 #FamilyFirst 🏡 #SpreadTheJoy 🎁 #CharityMatters 🌟 #TogetherWeCan 💪 #SandcastleTrust ❤️
The Sandcastle Trust has been paid £47.45 this week thanks to our community shopping online! A huge thank you to everyone who supports us 💛💛.
Want to get involved? Sign up to easyfundraising so your Black Friday, Christmas and all other online shopping at your favourite retailers turns into much-needed funding for us. It`ll take you two minutes to sign up: https://join.easyfundraising.org.uk/sandcastletrust/8WTNCT/dda/U5SijpKB/Q3244/facebook/47.45 (link in our Linktree)
"Thank you very much from us all for the wonderful week we had at the caravan at Brynteg, Wales. We had such a lovely time and Lottie really enjoyed being away on the first holiday we’ve had together in a lot of years. I took Lottie and her brother, Mani and it was just great spending a chilled week together. She settled in after a couple of days and then was happy going on some short days out including a beach in Anglesey, train to see Snowdon, Caernarfon Castle and Llandudno to find Alice in Wonderland and see the pier.
Lottie has IDIC15 (genetic condition with a chromosomal abnormality) so severe learning difficulties plus autism and adhd can make holidays and days out really difficult. We were so lucky the sun shone and we had the days out to make some lovely memories. Plus the lovely facilities on a site were just what we needed. We are very grateful for the holiday, it meant the world to us. Lottie sometimes still says ‘we go on holiday, to the caravan’."
✨🎄 A little Christmas treat for Sandcastle Families! 🎄✨
This Christmas, we’re excited to offer a special baking kit to help you create your very own gingerbread house—perfect for some family festive fun together! 🏠🎅 A vegan-friendly option is also available.
To make sure the kit is safe for your family, please check the allergens listed on the Craft & Crumb website before applying.
Ready to get started? You can find the application form here: https://sandcastletrust.formstack.com/forms/gingerbreadhouse (link in our bio)
Hurry—applications close on November 12th, and please note this is for families living with a rare genetic condition who haven’t received a Sandcastle Santa day out this year.
We can’t wait to see your gingerbread masterpieces! 🍪✨
The Sandcastle Trust is incredibly grateful for the wonderful support we receive, but the growing demand for our services is far outpacing our resources and we urgently need to raise more funds so we can continue providing our emotional wellbeing services to the rare genetic condition community. Please consider becoming a Regular Giver. Just £5 a month would make a huge difference! Thank you 💙🧡 https://sandcastletrust.org/donate/donate/ (Link also in our bio)
Teddy lives with a genetic condition called AADC Deficiency. It is so rare it impacts only 130 children worldwide. Teddy and his family recently enjoyed a Sandcastle Memory break in Cornwall that was donated by the wonderful @harrodscornishcottages - please follow their page and consider them for your next accessible break. 💙🧡 We are so grateful to them for supporting The Sandcastle Trust’s work, as are Teddy and his family:
“Such a magical half term. Thank you to the @sandcastletrust for our accessible holiday at @harrodscornishcottages. Thank you Rebecca for gifting our holiday. It was perfect having all of the aids needed to make @tedssmile feel comfortable and safe. We had lots of fun at the beach with friends and Ted loved using the beach wheelchair.
@harrodscornishcottages provide all of the accessible aids you need including a profile bed , wet room and shower chair. The cottage was 5* and even has a hot tub. Ted loved the home made jam and scones and being able to access the whole house.“
🧡💙
🌊 Meet Edward, a 3-year-old little boy who lives with Sanfilippo Syndrome, a rare and life-limiting genetic condition. Edward and his family recently had the chance to unwind and make beautiful memories on a Sandcastle Trust break in Skegness.
Here’s a snapshot of their joy, laughter, and connection—the heart of what our breaks are all about. 💙✨
“I just wanted to send you an email to say what a wonderful time we`ve had at the caravan in Skegness. Edward has loved it and it`s been absolutely lovely spending this time together as a family.”
#MakingMemories #SandcastleTrust #FamilySupport #SanfilippoSyndrome #GeneticConditions #FamilyBreaks
“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
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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
