We are a charity that assists those who suffer or are affected by MECP2 Duplication Syndrome.
We help those with their support needs and other issues, keep reading to find out more.
We are based in the UK and help those here, if you are not from the UK but still need help, get in contact!
MECP2 Duplication UK started off as a support group in 2012 but as time went on we realised we were not alone and other families needed help & support.
In 2014 we achieved charity status
Our charity has certain aims we attend to focus our efforts on these are as follows:
- To provide Support emotionally, practically and financially to families affected by MECP2 Duplication Syndrome, reducing isolation and exclusion.
- To Raise Awareness of MECP2 Duplication Syndrome and join up with other relevant organisations.
- To promote and support Research into MECP2 Duplication Syndrome which could potentially lead to treatments, which could enhance the lives of those affected by the syndrome.
- For our charity to grow and develop for the long term benefits of the MECP2 Duplication Syndrome community.
Living with MECP2 Duplication Syndrome can be a battle at times but rewarding too. We all deal with things differently and will require different levels of support at different times.
- You may need to purchase expensive things
- Your income may reduce
- Your travel costs may increase
- Your living expenses, such as energy bills, may increase.
There are many ways to get extra financial help and we will try to assist you in getting this. This could be from a variety of sources including:
- Government related benefits, are you getting what you are entitled to?
- Local assistance
- Grants - Local assistance
As a charity, we can assist with financial assistance by way of a grant in some cases for families but our funds are limited and we are therefore unable to give financial assistance to each and every applicant. Get in touch with us for more advice on the above.
At first, you may feel confused, depressed or anxious about your life in the future after your child receives the diagnosis of MECP2 Duplication Syndrome but all is not lost. Disability will inevitably bring new challenges, but it should never stop you living a happy, fulfilling life! As a carer you will have more responsibilities, a carer can be:
- Children (whether adult or not)
- Husbands, wives and partners
- Other relatives
- Friends & Neighbours
Whatever your relationship you have a important part to play in the childs life. Looking after someone can be emotionally draining. It can leave you feeling exhausted, overwhelmed, and stressed. It can also mean that you have no time for a life of your own, no time to meet up with friends and talk about your worries, and that you become lonely and isolated. We have a great support network here at MECP2 Duplication UK and we would love to welcome you onboard. We have days out, meet other families and discuss the days trials and tribulations which continue to challenge us.
Medical & Bereavement Support
MECP2 Duplication Syndrome is a newly discovered condition that was recognised in 2005. With so few children being diagnosed with it, it can sometimes be difficult getting health care professionals to understand what it is and the dangers surrounding it. We have our own medical adviser, Jill Clayton-Smith, who will be able to assist with any matter you may have with your local healthcare professionals and we can also assist by referring and guiding you through the process.
Bereavement is also very difficult to deal with, we will support you as much as possible but we strongly advise you to seek assistance from a specialist. The below contacts are a great starting point to put you in touch with those that can help.
Bereavement Advice Centre - 0800 634 9494 - email@example.com - Supports bereaved people on a range of practical issues via a single freephone number.
Cruse Bereavement Care - 0844 477 9400 – firstname.lastname@example.org - Advice to anyone who has been affected by a death.
Child Bereavement UK - 01494 568900 - email@example.com - Supports families and provides training to professionals both when a baby or child of any age dies or is dying, or when a child is facing bereavement.
MECP2 Duplication UK are fortunate to have a dedicated team of voluntary Trustees. These consist with parents and grandparents of children affected by the syndrome and bring a wealth of knowledge and experience. Our Trustees are:
Committee members with the trustees form an integral part of our Charity and also dedicate their time on a voluntary basis. The Committee meets four times a year to ensure the aims of the MECP2 Duplication Syndrome are being met. Our Committee members are above:
Cruse bereavement care 0844 477 9400 – firstname.lastname@example.org Advice to anyone who has been affected by a death.
Child death support helpline 0800 282 986 Helpline for anyone affected by the death of a child of any age, from prebirth to adult, under any circumstances, however recently or long ago.
As a non-profit organization, MECP2 Duplication UK gladly accepts your donations, which are tax-deductible to the extent allowed by law. Your generous gift will enable the charity to provide the support and advice that families need as well as facilitating their needs in complex cases. We could not operate without the support of private individuals wishing to donate and fundraise on our behalf.
The support group actively seeks fund raising opportunities and our efforts are as diverse as the membership. If you wish to donate or fundraise on behalf of MECP2 Duplication UK please get in contact via the form below.