Charities
The Nystagmus Network supports the 1 in 1,000 people who have nystagmus and encourages research into this complex eye condition. Nystagmus -- sometimes known as wobbly eyes -- seriously impairs vision. Few people with nystagmus can see well enough to drive for example. Nystagmus can lead to social and emotional problems as well as creating barriers to education and employment. Anyone can have a child with nystagmus or develop the condition in later life.
The Chromosome 18 Registry and Research Society (Europe) is a European wide organisation set up to cater for the specific needs of those with Chromosome 18 disorders, their parents, relatives and siblings. As the name implies, it is closely associated with the Chromosome 18 Registry and Research Society in San Antonio, Texas, as well as having ties to the associations throughout Europe that deal with all rare chromosome disorders (such as Unique in the UK, Valentin-APAC in France and Leona e.V. in Germany). So far we have launched a web-site (http//:www.chromosome18eur.org ), started to recruit members across Europe and are beginning to seek funding and after organising a successful conference in Glasgow in 2010, we are organising our second. This will be held in Milan Italy from August 3rd to August 5th, 2012.
Please note Virgin Money Giving isn't responsible for the content fundraisers post on their pages, but if you see something you feel is offensive or inappropriate, please let us know and we'll look into it.
Just James:Raising money for 18q- & Nystagmus
James Kirkham is our 2 year old son, and like any 2 year old he keeps us awake at night, tires us out, runs us ragged and makes us laugh. But unlike most 2 year olds James has a rare chromosome disorder called (deep breath for the full title) Chromosome 18q Distal Deletion Syndrome, or 18q- for short.
James also has Nystagmus, a type ofpartial blindness caused by James' eyes constantly moving.
Funding for research and support into18q- and Nystagmus is very limited. We are trying to raise as much money as possible for two charities to help research into the disorders, and to provide help to people affected by the disorders, and their families.
I am running 'The Wall Run', a 69 mile race across Hadrian's Wall. 35 miles on day 1, 34 miles on day 2. 3 marathons in 2 days. Whichever way you look at it, it will be epic!
You can read all about James, and a lot more about 18q- and Nystagmus on our webiste
I also have my own site, blogging about my running, in particular training to run the length of Hadrian's Wall
Kirky's Progress will keep you up to date with my fundraising efforts. I am going to raise as much money as possible by completing physical challenges including marathons, long distance cycling, fell running and so on. If you want me to do a particular challenge, let me know!
Recent donors
|
Marian £5.00 (+ £1.25 giftaid) 24.05.12 Well worth it! |
|
Myke G £10.00 (+ £2.50 giftaid) 23.05.12 good luck with the run. |
|
Janina, David, Adam & Macy £5.00 (+ £1.25 giftaid) 02.05.12 |
|
Anonymous £1.00 (+ £0.25 giftaid) 02.05.12 |
|
Pam £5.00 (+ £1.25 giftaid) 02.05.12 |
|
Janet £10.00 (+ £2.50 giftaid) 02.05.12 |
|
Dan O'Hara £10.00 02.05.12 Well done on the Marathon Mark and good luck for the Wall Run! |
|
Emma Renshaw £5.00 (+ £1.25 giftaid) 02.05.12 well done Mark, we got thro that marathon !! first timers, good luck with your fundraising- lovely family Emma (running club) |
|
Paul & Kerry Pleasant £10.00 (+ £2.50 giftaid) 29.04.12 Better late than never. Congrats on completing the Marathon |
|
Sara Burgess £10.00 (+ £2.50 giftaid) 29.04.12 Well Done Mark,its for a great cause xxx (Macys mum) |
|
James Lillis £25.00 (+ £6.25 giftaid) 29.04.12 We hope the race is going well! Looking forward to hearing all abou it. Well done! James and Helen |
|
Rachel & Bernard Lillis £20.00 (+ £5.00 giftaid) 29.04.12 |
|
The Holt Family £10.00 29.04.12 Best of luck from a family in Australia toUches by 18q-. |
|
Liz Wilson £10.00 28.04.12 Lots of luck Mark from Liz, Adam & family |
|
Sarah and Darren Stott £10.00 (+ £2.50 giftaid) 28.04.12 Good Luck for tomorrow! Best wishes Sarah and Darren x (George's Auntie and Unlce) |
|
Margery Lyons £20.00 (+ £5.00 giftaid) 28.04.12 Good luck tomorrow, have a great run!! (George's Grandma. Ring 18) x x |
|
Tracy £10.00 (+ £2.50 giftaid) 28.04.12 Good luck!! |
|
Sarah Lillis £8.00 (+ £2.00 giftaid) 28.04.12 |
|
Anna K £20.00 27.04.12 Have a great run, Mark! All the best to you and the family. Anna |
|
Jemma, Neil & Eden xx £10.00 (+ £2.50 giftaid) 22.04.12 Good luck for your first marathon Kirky. We know the importance of research now & hope this small contribution helps. Xx |
|
Brenda Cobb £10.00 04.04.12 Best of luck - you're in my prayers! |
|
Jennifer £5.00 (+ £1.25 giftaid) 04.04.12 Enjoy! x |
|
Jean Bates (18 Ring0 £20.00 (+ £5.00 giftaid) 03.03.12 Good Luck Mark. You are doing well with the fundraising. Jean, Peter and Matthew (18Ring) |
|
James Alec Taylor £20.00 (+ £5.00 giftaid) 27.01.12 Good luck Mark |
|
Anonymous £10.00 (+ £2.50 giftaid) 19.12.11 |
|
Chorley Jobcentre £40.00 12.12.11 |
|
Linda £2.00 21.11.11 |
|
Sofie Haidon £5.00 19.11.11 |
|
Anonymous £20.00 (+ £5.00 giftaid) 02.11.11 |
|
Louise Robshaw and clan £3.00 13.10.11 Best of luck, to you all xxx |
|
Chris Ryding £10.00 (+ £2.50 giftaid) 12.10.11 |
|
Maxine £5.00 11.10.11 |
|
Marjorie £10.00 09.10.11 |
|
Anonymous £10.00 (+ £2.50 giftaid) 06.10.11 |
|
Anonymous £2.00 (+ £0.50 giftaid) 06.10.11 |
|
Hardeep Sohal £10.00 (+ £2.50 giftaid) 02.10.11 |
|
Beverley £20.00 (+ £5.00 giftaid) 02.10.11 Well done and congratulations. |
|
Anonymous £20.00 (+ £5.00 giftaid) 29.09.11 good luck to the pair of you, love Grandma |
|
susan kirkham £20.00 (+ £5.00 giftaid) 26.09.11 wish I could afford more........... |
|
Andy Gerrard £5.00 (+ £1.25 giftaid) 23.09.11 |
|
Anonymous £10.00 (+ £2.50 giftaid) 22.09.11 Good luck Mark |
|
Tricia Lillis £20.00 (+ £5.00 giftaid) 20.09.11 |
|
lisa kirkham £20.00 (+ £5.00 giftaid) 15.09.11 So proud to be your cousin xx |
|
Janina £5.00 (+ £1.25 giftaid) 12.09.11 If I was rich I'g give you more |
|
Aunt Jennifer £5.00 (+ £1.25 giftaid) 12.09.11 Enjoy the day x x |
|
don and Roz £30.00 (+ £7.50 giftaid) 05.09.11 beat your personal best and I'll double it! good luck. |
|
Anonymous £5.00 (+ £1.25 giftaid) 04.09.11 |
|
cheryl and olly donlan ! £20.00 (+ £5.00 giftaid) 24.08.11 Great to see more people fundraising for the smaller well deserved charities !!! Well done any help you need let us know !!! |
Running total
- Target:
- £1,000.00
- Total raised incl. Gift Aid:
- £688.75
- Total donors:
- 48
- Biggest donor:
-
Chorley Jobcentre
£40.00 - Last donor:
- Marian 24.05.12
- Offline fundraising:
- £0.00
