We have secured a small number of guaranteed charity places for the 2024 Great North Run, and we would love you to join Team Sandcastle...
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
Royal Parks Half Marathon 2024
We have the opportunity to take part in the 2024 Royal Parks Half Marathon and we would love you to join Team Sandcastle for this...
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…
Absolutely thrilled to have just picked up the keys to @sandcastletrust’s new accessible caravan on the tranquil @brynteg_retreat country park in beautiful North Wales 🏴 It’s just having some tweaks and ramped access decking fitted ready to welcome its first guests in the summer holidays! A huge heartfelt thank you to every donor, fundraiser, supporter and company that has helped make this happen 🧡 Because of you, we will be able to help even more families living with the challenges of a rare genetic condition create special family memories #SandcastleTrust #raregeneticcondition #brynteg
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 😊
Did you know that we have a section in the Support Hub on our website called Sandcastle Retreats?
We understand how important it is to find truly inclusive holiday accommodation for your family. Sandcastle Retreats is a useful resource for families living with a rare genetic condition searching for holiday accommodation that is accessible for those with physical, sensory and/or learning disabilities.
Accessibility means different things to different people and so each property listing clearly sets out its accessibility features to help you find the family holiday you want with the accessibility you need.
The accessible holiday properties that feature on the Sandcastle Retreats page pay a small annual fee to advertise with us or are able to advertise for free if they donate a holiday to benefit a family supported by The Sandcastle Trust. So, by searching for your next family holiday using our Sandcastle Retreats page, you will also be supporting our work providing fun and respite opportunities for families living with a rare genetic condition. https://sandcastletrust.org/sandcastleretreats/ (Link in bio).
⭐️Sandcastle Trust Summer Appeal⭐️
Can you help us purchase this wheelchair accessible caravan on the beautiful Brynteg Holiday Park in North Wales?
Please donate to our appeal and help us provide more family respite breaks to those living with a rare genetic condition.
https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024 (link also in our bio).
Meet Theo!
Theo lives with a rare, genetic form of epilepsy called Ohtahara Syndrome which causes hard to control seizures as well as developmental delays and potentially life threatening complications.
Thanks to Theo’s mum for sharing these lovely photos with us of him enjoying a a break with his family recently at our Sandcastle caravan in Skegness. We are currently fundraising very hard to purchase a second adapted caravan so we can provide even more families with a much needed break away – can you help? 🙏👉 https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024
Meet Macy! Eight-year-old Macy lives with a rare genetic condition called Alstrom Syndrome. It is characterised by progressive loss of vision and hearing, heart disease and severe life threatening multi-organ fibrosis involving the liver, kidney and heart. Macy experienced two cardiac arrests as a baby sustaining a brain injury due to lack of oxygen. She is also severely sight impaired. There are only around 80 cases of Alstrom Syndrome in the UK and just over 1,000 in the world.
You may recognise Macy’s smiley face from our Summer Campaign which we launched yesterday which features an image of her in our caravan in Skegness excitedly getting ready to go swimming at the pool! Here are some more lovely photos from their family’s recent Sandcastle Memory break. We are currently fundraising very hard to purchase a second adapted caravan so we can provide even more families with a much needed break away – can you help? 👉 https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024 (link also in our bio)
Summer’s here, and while most of us are dreaming of beach days and ice cream, families who are living with a rare genetic condition are facing tougher challenges.
That’s where we come in. The Sandcastle Trust has had a fantastic year thanks to your support, but we need a little extra sunshine to raise £10k in the next six weeks. Why are we setting ourselves this big challenge? To buy a second adapted caravan that will give more families with rare genetic conditions the seaside break they desperately need this summer.
Imagine the joy of seeing these families, who often face unimaginable hurdles, enjoying a fun and carefree holiday by the sea. We have been fundraising hard all year to make this happen and thanks to YOU we are nearly there but we need a little extra to get us over the finishing line in time for the summer holidays.
Every penny counts, and we’re calling on our amazing Sandcastle community to help spread the word and make this dream a reality. Share our story, donate what you can, arrange a fundraiser, take on a challenge or donate in a loved one’s memory, and together, let’s create some magical summer moments. We believe in the power of a good break, and with your help, we can give the families living with the challenges of a rare genetic condition something truly special – a slice of summer joy and the freedom to just be a family.
Ready to make a difference? Click, share, and donate. Let’s bring some sunshine into their lives. Thank you for being the incredible supporters you are!
Donate here 👉 https://sandcastletrust.enthuse.com/cf/the-sandcastle-trust-summer-appeal-2024
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).
⭐️LAST CHANCE TO REGISTER ⭐️ We are working with Rareminds to offer you the opportunity to attend an interactive online workshop facilitated by Anna Smith, one of Rareminds specialist Counsellors. This small group (up to 15 members) interactive workshop is for parent carers impacted by a rare genetic condition.
Part presentation and part group discussion it will explore the emotional challenges of having a child/dependent adult child with a rare genetic condition, looking at themes such as building relationships with healthcare teams, anxiety and managing uncertainty, as well as some practical tools and ideas about coping as well as possible with the impact of a rare genetic condition.
It will provide a supportive, confidential space to share experiences, meet with others and perhaps find new skills and coping strategies for living with the emotional impact of a rare genetic condition diagnosis.
To book your place, please email: admin@rareminds.org copying in info@sandcastletrust.org
We look forward to seeing you there!
For all things Sandcastle, sign up to our monthly newsletter.
Lots of examples of how your support makes a difference to the lives of families living with a rare genetic condition and all the latest news from our small charity, direct to your inbox: http://eepurl.com/c5b01r (the link is also in our Linktree in our bio).
Do you own an accessible holiday property? If so, you could make an invaluable difference to The Sandcastle Trust in several different of ways:
👉 On our charity website, we have a directory of accessible, inclusive holiday accommodation providers called ‘Sandcastle Retreats’. The accessible holiday properties that feature on the Sandcastle Retreats page pay a small annual fee of £50 to advertise with us and we invest this money into providing free respite opportunities to families living with the challenges of a rare genetic condition. If you would like to list your property with us, please get in touch! https://sandcastletrust.org/sandcastleretreats/
👉 Alternatively, if you have availability, why not donate a break to The Sandcastle Trust and we will ensure it is matched to a family affected by a life-changing rare genetic condition needing much needed family fun and respite. You can donate as many or as few nights as you wish. As a thank you, we will acknowledge your donation publicly on our social media pages and provide your property with a free life-time listing on our Sandcastle Retreats listing page.
It’s Mental Health Awareness Week 💙
Please take 5 minutes to complete our survey to help us learn more about the emotional impact of living with or caring for a loved one with a rare genetic condition. As a thank you for taking the time to share your experiences, we will enter you into a draw to win a £50 Amazon voucher.
Find out more here 👉 https://sandcastletrust.org/take-part-in-our-survey-and-be-in-with-a-chance-of-winning-a-50-amazon-voucher/ (link also in our Linktree in our bio).
Don’t forget we are working with Rareminds to offer you the opportunity to attend an interactive online workshop facilitated by Anna Smith, one of Rareminds specialist Counsellors. This small group (up to 15 members) interactive workshop is for parent carers impacted by a rare genetic condition.
Part presentation and part group discussion it will explore the emotional challenges of having a child/dependent adult child with a rare genetic condition, looking at themes such as building relationships with healthcare teams, anxiety and managing uncertainty, as well as some practical tools and ideas about coping as well as possible with the impact of a rare genetic condition.
It will provide a supportive, confidential space to share experiences, meet with others and perhaps find new skills and coping strategies for living with the emotional impact of a rare genetic condition diagnosis.
To book your place, please email: admin@rareminds.org copying in info@sandcastletrust.org
We look forward to seeing you there!
"In October half term The Sandcastle Trust gifted our family a stay in their caravan. It was amazing to get away as a family. Eric has a rare genetic condition called Beckwith Wiedemann Syndrome and lives with autism and other complex disabilities. He does struggle with being away from his house as its his safe space, but it was nice to have an opportunity to encourage him out of his comfort zone and we all had so much fun. Eric loved the arcades, swimming and all activities which were available.”
Our new 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. 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/ (the link is also in our Linktree in our bio).
Don’t miss your chance to run the 2025 London Marathon for The Sandcastle Trust 🏃🏃
Were you inspired by this year’s London Marathon?
The public ballot for 2025 is now open – but until tomorrow only!
If you are lucky enough to get a public ballot spot, we would LOVE you to consider using it to fundraise for The Sandcastle Trust to help us support families affected by a rare genetic condition.
It’s very hard (and expensive!) for little charities like ours to obtain charity places.
Good luck! 🏅
https://www.instagram.com/reel/C5-avXvMToF/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA%3D%3D (Link in bio)
⭐️⭐️ Nominate The Sandcastle Trust to win £5000 ⭐️⭐️
The Benefact Group Movement for Good Health and Wellbeing Special Draw is now open - but you only have until this Friday to nominate The Sandcastle Trust!
You can nominate us here 👉https://health.movementforgood.com/#nominateACharity
(Charity number 1169523) the link is also in our bio in our Linktree.
Thank you for your support 💛
Penny lives with the rare genetic condition Ehlers-Danlos Syndrome, is a wheelchair user and requires 24/7 care. Penny and her two children, along with the help of a carer recently enjoyed a week’s break at the Sandcastle Trust’s adapted caravan in Skegness:
“Thank you very much for providing us with such a fantastic holiday experience! We had a wonderful time staying at your caravan in Southview Holiday Park. This has truly been an unforgettable holiday that I never imagined I would have the opportunity to enjoy. We created some cherished memories together, and my children particularly loved the evening entertainment at the park. We all participated in karaoke, which surprised me as I never thought my children would be interested in it. They truly amazed me, and I am incredibly proud of them. I want to express my deepest gratitude for giving us this wonderful gift and enabling us to create magical memories with my children that I never thought possible. Despite my multiple health complications and disabilities, I was able to enjoy myself immensely. Thank you once again for this incredible holiday. We truly appreciate it!”
📣 PLEASE TAKE PART IN OUR SURVEY - YOUR VOICE MATTERS! 📣
Please take part in our survey to help us learn more about the emotional impact of living with or caring for a loved one with a rare genetic condition. As a thank you for taking the time to share your experiences, we will enter you into a draw to win a £50 Amazon voucher.
Find out more here 👉 https://sandcastletrust.org/take-part-in-our-survey-and-be-in-with-a-chance-of-winning-a-50-amazon-voucher/ (the link is also in our linktree in our bio).
Did you know that we have a section in the Support Hub on our website called Sandcastle Retreats?
We understand how important it is to find truly inclusive holiday accommodation for your family. Sandcastle Retreats is a useful resource for families living with a rare genetic condition searching for holiday accommodation that is accessible for those with physical, sensory and/or learning disabilities.
Accessibility means different things to different people and so each property listing clearly sets out its accessibility features to help you find the family holiday you want with the accessibility you need.
The accessible holiday properties that feature on the Sandcastle Retreats page pay a small annual fee to advertise with us or are able to advertise for free if they donate a holiday to benefit a family supported by The Sandcastle Trust. So, by searching for your next family holiday using our Sandcastle Retreats page, you will also be supporting our work providing fun and respite opportunities for families living with a rare genetic condition. https://sandcastletrust.org/sandcastleretreats/ (Link in bio).
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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Felix’s Story
“We were fortunate enough to be offered complimentary tickets on a Polar Express train ride for us all via the charity. We had a wonderful evening….Rare genetic conditions can be extremely difficult to deal with as are all disabilities, but having the cherished moments to look forward to and refer back to is a wonderful gift. Such a simple idea, but so powerful!”
John & Julie Davidson
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Contact Us:
0207 1998 261
info@sandcastletrust.org
Registered Charity No. 1169523.
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