Is my family eligible?

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 is a Sandcastle Memory?
The Sandcastle Trust provides families affected by a rare genetic condition with bespoke family respite  to help them build positive memories and strengthen relationships. We call these respite packages ‘Sandcastle Memories’.  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.  A Sandcastle Memory can take a variety of forms.

 

How do I apply for a Sandcastle Memory?
To apply for a Sandcastle Memory please download an application form or you can email us at info@sandcastletrust.org to ask for one to be sent to you.

In order to make the application process as straightforward as possible we accept applications directly from affected families.  We are 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.

 

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.

 

Is there an age limit?

The Sandcastle Trust is unique in that access to our grants does not stop at age 18.  We recognise that families containing a young adult or a parent with a rare genetic condition need support too.

 

Is there an income limit?

Access to support from The Sandcastle Trust is not means tested and you do not need to be in receipt of benefits to apply.  However, we do ask for information on the household income in our application form.  This is because all our grants are discretionary and subject to available funding. We may therefore decide to prioritise an application over another where a family has a significant level of household income.

 

I have received a grant for a short break from another charity – can I also apply to The Sandcastle Trust?

When completing your application you will be asked if you have received support for a short break or holiday from another charity.  Please note that we share information with other grant giving and wish making organisations.

Our funds are limited and although having received support from another charity of a similar nature does not prevent you from applying to The Sandcastle Trust for a short break, priority will be given to families who are not eligible to receive this kind of support elsewhere.  We would therefore encourage you to apply for a special day trip or an annual attraction pass instead or provide an alternative special day trip or annual pass option on your application form in the event we are not in a position to award you a grant for a short break.

 

My family has received a Sandcastle Memory before - can we apply again?

The Sandcastle Trust can only consider one main Sandcastle Memory application per family unless in exceptional circumstances, (i.e. bereavement). Please contact The Sandcastle Trust if you believe this applies.  This does not apply to additional schemes run by the Sandcastle Trust throughout the year, for example, the Sandcastle Santa scheme.  Families are welcome to apply every year to these schemes although funds are limited and preference will be given to families who have not received support from The Sandcastle Trust before.

 

I am a health professional. Can I refer a family I am supporting?

We are keen to make our application process as straightforward as possible.  We are therefore happy to receive applications directly from families or from a supporting health professional.  We ask that the family registers as a Sandcastle Family here and also signs the application form if they are not applying directly.

 

How will I know if my application has been received?

We acknowledge all applications received via email (if you have supplied an email address on your application form).  If you have not received an acknowledgement then please email us at info@sandcastletrust.org 

 

How can I check on the progress of my application?

We acknowledge all applications upon receipt.  It can take up to 12 weeks to receive a decision on your application and we may well contact you within this time to request further information.  If 12 weeks have passed and you have not heard from us please email us at info@sandcastletrust.org

 

How long does the application process take?

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 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.

 

Do you offer short breaks abroad?
Sandcastle Memories involving short breaks are based within the UK only.

 

Do you help with travel arrangements?

The Sandcastle Trust does not usually provide assistance with travel.  However, please indicate on your application form if you anticipate having problems with travel which may affect your ability to access a short break or special day trip.  This can be looked at when considering your application.

 

My family has been awarded a Sandcastle Memory - can extended family such as grandparents and cousins be included?

We cannot arrange for additional people to take part in a Sandcastle Memory unless an additional carer is required.  If this is the case please provide full details in your application form along with supporting documentary evidence.  However, we can provide all the details so that other members can make their own arrangements to join in with the special day or short break at their own expense.

 

Terms and Conditions

You can download our full terms and conditions here.

 

How can I get more information?

Please email us at info@sandcastletrust.org

Please accept our apologies if we have not been able to answer your question. If you would like to speak to us, please do not hesitate to give us a call on 0207 1998 261 or email us at info@sandcastletrust.org. We would love to hear from you and are always happy to answer any questions you have.