Jason Needham

Ali & Jay's Wedding 'List' - Raising Funds for Unique

Fundraising for UNIQUE (Rare Chromosome Disorder Support Group)
raised of £2,000 target
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Celebrating the wedding of Alice and Jason, 31 May 2019
Participants: Alice and Jason
We Provide support and information to improve the care of those affected


To any of us without a relevant scientific background, many things about genetic conditions can seem surprising. Some stand-outs are:

•    Muddled or missing genes really matter, whether that be the tiniest tweak - such as one single copy of one gene being deleted - or the absence and rearrangement of a whole section of a chromosome (containing thousands of genes), as in Gabriel’s case…both could have an equally life-changing impact.

•    Some genetic conditions have names – but most don’t! As the most common chromosome disorder, the duplication of chromosome 21 has long been known as ‘Down’s Syndrome’. However, Gabe’s condition and many more, are ‘named’ only for the location of the affected genetic material– in his case, the short arm (‘p’) of his chromosome 8.

•    Despite the rarity of each individual condition– Gabriel shares a similarly affected ‘8p’ with only around 80 other people currently on record–there are hundreds of different conditions. For each of the 23 chromosomes, there are an average of 9 different disorders listed on Unique’s website…added to which there are the single gene disorders…In fact if all those with rare genetic conditions and diseases (of which 80% have a genetic basis) were collected together they would form the world’s 3rd most populous country.

Given all that perhaps the most surprising fact is this one:

•    There is no government-funded body responsible for a database of all rare chromosome and gene disorders, or for providing information to families receiving and living with a rare diagnosis.

That has been the work of the Unique charity. For a child receiving such a diagnosis, what their doctor will be relying on to convey any idea of what it means and what happens next…will be a guide funded solely by the charity (and aided by the generous time-contributions of medical professionals). With no government funding (and on a shoestring budget of £300k/year), Unique have worked tirelessly to support their affected members and raise awareness of rare genetic conditions. In a landscape of ever more limited opportunities to secure grants, fundraising and donations will help them to continue this essential work.

About the charity

Unique provides much needed help and information to those caring for a family member with a rare chromosome or single gene disorder. These are lifelong conditions affecting at least 1 in 200 babies, causing disability and medical issues. For more information see www.rarechromo.org

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