Sandcastle Memories are available to families where an individual (or individuals) have been diagnosed with a rare genetic condition (single gene inheritance, mitochondrial inheritance or chromosome disorder) that affects less than 5 in 10,000 of the general population and that condition has had an enduring impact on family life.
At least one of the following must also apply:
- The condition is degenerative;
- The condition is life threatening;
- The condition is life limiting;
- The condition causes severe, chronic disability or illness; and/or;
- The condition results in complex health needs and/or learning disabilities that impact on the family’s choices, ability to access social opportunities and enjoy family life.
Families who have suffered a bereavement as a result of a rare genetic condition are also eligible to apply.
You can review our full eligibility criteria here.
Please note our funds are limited and we will be unable to fund every Sandcastle Memory requested. Sandcastle Memories are generally awarded to eligible cases that demonstrate the greatest need, and where we feel our funding can make the biggest difference.
What can my family apply for?
It is our mission to support families living with a diagnosis of a rare genetic condition, to build positive family memories and strengthen their family relationships. The families we support come from many different backgrounds and cultures. The needs of the individual with a rare genetic condition will differ hugely; family members may act as carers for a parent or sibling or the family may have suffered a bereavement. We therefore do not take a ‘one-size-fits-all’ approach to the Sandcastle Memories that we award. Eligible families can apply for either a short break, special day trip, or annual attraction pass but we recognise that they are experts in their owns lives and aim to offer as much choice as possible as to what form their Sandcastle Memory should take.
Eligible families can apply for a short family break which can be taken with one of our approved partners. Alternatively in some cases we can assist by funding a specific element of a family holiday you are planning yourself. Please note that we will never award a cash sum but rather will pay a supplier directly.
We are proud to work with the following supplier partners:
Special Day Trips and Annual Attraction Passes
Eligible families can apply for a wide variety of day trips or experiences, for example the seaside, a theme park or the theatre. We can also provide season tickets or annual passes to attractions such as zoos, farms or steam railways.
Read some of our family stories to see what other families have applied for.
The Sandcastle Trust also runs additional schemes throughout the year for the benefit of affected families. For example, Sandcastle Santa. The terms and conditions of these schemes will vary but in most cases they will be available to all eligible families whether they have received a Sandcastle Memory in the past or not with preference being given to those families who have not received support from us before. Please sign up to our mailing list and follow us on social media to keep up to date with these schemes.
Support for Groups
Having a family member with a rare genetic condition can often be a lonely, isolating experience. Meeting with other families in a similar situation can be a vital avenue of support and result in lasting friendships. When a genetic condition is rare, affected families are often dotted around the country which means the costs and logistics can be tricky.
The Sandcastle Trust can provide support to rare genetic patient groups and small disorder specific charities to help fund family meet ups and fun days. Please can interested groups email us at firstname.lastname@example.org for more information.
Apply for a Sandcastle Memory
In order to make the application process as straightforward as possible we accept applications directly from affected families. We are happy also happy to accept application forms completed by professionals working with a family affected by a rare genetic condition in a supporting role such as a social worker, family support worker or health visitor although the form must also be signed by a parent in the family you are supporting.
We accept one Sandcastle Memory application per household. However, if more than one person in your family is diagnosed with a rare genetic condition please ensure you detail this on the form.
If you are unsure about any of the information provided or need further help, please contact us via email.
What happens next?
It will take up to 12 weeks to receive a decision on your application. However, this timescale is approximate and not guaranteed. The actual time taken to deal with an application will depend on whether we need to request further information from you, the volume of applications we have and the funding available at any particular time.
Please note that if your application form is incomplete and/or does not include copies of the required documents, then your application will be returned to you for completion. We are unable to consider an application until it is received fully complete. Please read the application form carefully and enclose copies of all requested documents.