Thanks for taking the time to visit my JustGiving page.

I will be running the Great North Run this year for my chosen charity, Max Appeal!  This is no mean feat with a track record - no pun intended - of having run 800 metres max a long, long time ago! 13 Miles, yes 13 miles - I must be mad!!

I was asked by a good friend whether I knew any runners.......he was looking for runners to support his charity and the rest is recent history.  Well, you can't let your friends down now can you!

Like me, you may never have heard of Max Appeal! or indeed that it was set up by some very dedicated and hard working people for those affected by DiGeorg Syndrome VCFS/22q11.2 deletion syndrome and their families.

Who was Max?

Max was born on 5th November 1998.  He died of overwhelming septicaemia when he was just four months old due to complex heart defects combined with severe immunity problems.  Max was a resilient and beautiful baby who endured ceaseless pain during his short life.  Max was the second child of Julie and Paul who I am fortunate enough to call friends.  I am amazed at the tireless work they do with their colleagues and friends to pursue the interests of Max Appeal! and continue to support families through this life changing event.

We are talking about a complex and varied group of conditions.  Babies and young children may have complex heart defects requiring surgery, difficulties with metabolising calcium which can cause dangerous seizures; a poor immune system which can be life threatening but more usually means lots of time off school; speech and language difficulties caused by palate abnormalities; and specific learning difficulties.  25% of teenagers and and adults develop schizophrenia or other serious mental health problems.

22q deletion affects as many as 1 in 1,800 people.  It is the most common chromosome deletion but it is not usually an inherited condition.  It is a fault of the human race, a natural phenomenon, or just plain bad luck!  22q deletion is being more frequently recognised and diagnosed, so it is essential that Max Appeal! continues to grow to meet the needs of this increasing population of people.

As a dad of a brilliant girl who does me proud every day I realise just how lucky I am!

What We Do!

Max Appeal is establishing a national protocol for the care of people with 22q11.2 deletion syndromes.  This will materially improve the quality of life for all those with the syndromes and their families. (Cost £50,000)

Max Appeal hold an annual conference / open day for members to meet with medical professionals to share research and information.  (Cost £10,000)

Our newsletter keeps members and professionals up to date with information and has family stories to share. (Cost £3,000)

Organised events and weekend breaks provide an exciting challenges and a unique opportunity to meet and share experiences with others with 22q deletion. (Cost £1,000)

A national freephone helpline - 0800 389 1049, manned by trained volunteers is provided.  (Cost £500)

Grants are made towards travel costs to parents who may live many hours drive from the hospital where their child is being treated. (Cost £100)

We provide a comprehensive information pack and handbook for a newly diagnosed person and their family. (Cost £10)

Further information about Max Appeal! can be found at http://www.maxappeal.org.uk/

 

So, if like me you had never heard of Max Appeal!, didn't know what 22q deletion was and wanted to try and make a big contribution to a small charity then please donate generously.  I can promise you this is not going to be easy and I know that Julie, Paul and all the team at Max Appeal! would be thrilled with your support.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.