Jon Sypula
Jon's Run for SENSE in London Marathon 2011
Fundraising for Sense
Story
SENSE - Please Don't turn a deaf ear and a blind eye to us...
Thanks for taking the time to visit my JustGiving page and sponsoring me for running the London Marathon 2011 in aid of SENSE.
Being partially hearing presented me with many challenges in my early life, as I learned to cope with life with hearing aids. At the age of 16, a further challenge was presented to me.
At 16 I was diagnosed with Usher Syndrome, a genetic condition affecting 3-6% of people in the UK born partially hearing or deaf. Usher syndrome combines hearing loss with an eye condition called Retinitis Pigmentosa (RP). Retinitis Pigmentosa causes the retina in my eye to deteriorate causing night blindness, colour blindness and tunnel vision. This will result in the eventual loss of most of my sight. This came as a real shock to my family, girlfriend (who is now my wife!) and I, and knowing that there is no treatment or cure, this led to confusion and fear - and still does.
Fortunately, we came across SENSE who are there for the deafblind community. They provided huge amount of support and resource to my family and I which reassured me that I was not alone for which I am grateful.
We are not sure how quickly I will lose my sight, but I am very lucky to be able to see as well as I can at the moment, so am making the most of this opportunity to run the London Marathon and raise awareness of SENSE.
Their services include on-going support for deafblind people and families. This support ranges from day services where deafblind people have the opportunity to learn new skills to Sense-run houses in the community where people are supported to live as independently as possible.
Just £5.00 coud buy a set of musical bells to help stimulate even the tiniest amount of a deafblind childs hearing in music therapy.
£25.00 could buy an interactive light tube to help stimulate a deafblind childs remaining sight
£250.00 could kit out a home with sensory "trails" enabling the deafblind residents to idenfity specific rooms, stairs etc - enabling them to live in a safe, secure environment.
Your kind donation really DOES make a difference!
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.