Matthew Dawson will be abseiling down the UK’s allest piece of public art on 23 September to raise much needed funding for nystagmus research at Moorfields and UCL. He is joining Team Nystagmus Network Abseil at the suggestion of his wife and for his young son, Owen, who has nystagmus.
Apparently, some of Matt’s sponsors have asked him to wear fancy dress for the abseil. Maybe he will if his sponsorship total gets high enough!
Please sponsor Matt if you can.
Vicky and Claire are both trustees of the Nystagmus Network. That’s not all they have in common!
On 23 September they will both be scaling down the Olympic Park Orbit alongside their Team Nystagmus Network Abseil team mates.
They’re doing it to raise funding for nystagmus research. Every penny they raise will go directly into pioneering work at Moorfields Eye Hospital and University College, London.
You can help support them by visiting their Justgiving pages.
Click here to sponsor Vicky and her husband, Richard.
Click here to sponsor Claire.
Thank you both. We’re all so proud of you!
We’ve just heard that James and his little brother, Thomas, have successfully completed their summer fundraising challenge to raise a phenomenal £677 for two charities.
James (8) and Thomas (5) have spent their summer holidays walking 118 miles in aid of Chromosome 18 Registry and Research Society Europe and the Nystagmus Network.
Why these charities?
When James was 10 months old he was diagnosed with Nystagmus. He is registered visually impaired as a result.
James was later diagnosed with a very rare genetic disorder called Chromosome 18q-23 distal deletion syndrome.
At least 1 in 1,000 babies are born with nystagmus.
Chromosome 18q- affects 1 in 55,000 births.
So James is a very rare young man! He’s also very determined to succeed!
HUGE THANKS to both boys and congratulations on your brilliant achievement, from everyone at Nystagmus Network.
You can still CLICK THIS LINK TO SPONSOR JAMES. Thank you!
Glen is a member of the Nystagmus Network and a true friend of the charity. We were privileged to meet him last year when he led a workshop at Open Day on building social networks. You can read all about Glen’s adventures as a successful young man about London, who just happens to have aniridia and nystagmus, on his blog, Welleyenever.
Now Glen is taking the ultimate challenge for nystagmus research. He’s gong to be abseiling down from the 262 feet high viewing platform at the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park. It’s an exhilarating descent to the ground and Glen’s really looking forward to the breathtaking views across London.
You can join Glen for the Team Nystagmus Network Abseil. Contact us today for details.
To sponsor Glen, please visit his Justgiving page. Thank you!
Introducing Claire, the next member of Team Nystagmus Network Abseil. Claire is a keen rock climber, so abseiling her way down the ArcelorMittal Orbit is going to be a walk in the park! She’s doing it all to raise money for nystagmus research at Moorfields and UCL.
If you’d like to join Claire, please contact us today!
To sponsor Claire, please visit her Justgiving page. Thank you!
Vikki and her husband, Tom, were the very first to sign up to abseil down from the 262 feet high viewing platform at the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park.
Vikki’s family have been members and supporters of the Nystagmus Network for many years. Parents, Peter and Lynne, even organised an entire Open Day one year.
Every penny the couple raise will go directly into nystagmus research at Moorfields Eye Hospital and University College, London.
You can sponsor Vikki and Tom here.
Would you like to join Vikki and Tom for the abseil? If so, please contact us today!
Simon jumped out of a plane for the Nystagmus Network this morning and has raised over £1,000 for the charity!
Fresh back from a family holiday, Simon took to the skies earlier this morning, courtesy of the Red Devils Parachute Regiment Free-fall Team.
Simon’s sky dive was watched by friends and family, his wife, Sara and their children, including son, Charlie, who has nystagmus.
Congratulations Simon!
You can still SPONSOR SIMON HERE. Thank you!
If you’d like to leap from a plane for nystagmus, get in touch today!
Harry and his family raised over £1,000 for the Nystagmus Network last weekend by taking part in a sponsored fun triathlon.
What a phenomenal achievement! Well done, Harry!
To sponsor Harry, please click here.
Or why not take on your own summer challenge and help us raise more money for nystagmus support and research?
James and his little brother, Thomas, are taking on a very special challenge this summer to raise money for two charities very close to the family’s heart.
James (8) and Thomas (5) have decided to challenge themselves to walk 118 miles throughout August to raise money for Chromosome 18 Registry and Research Society Europe and the Nystagmus Network. This means an average of 3.8 miles per day consciously walked to get to their target.
Why these charities?
When James was 10 months old he was diagnosed with Nystagmus. He is registered visually impaired as a result.
James was later diagnosed with a very rare genetic disorder called Chromosome 18q-23 distal deletion syndrome.
At least 1 in 1,000 babies are born with nystagmus.
Chromosome 18q- effects 1 in 55,000 births.
Having both is super rare!
So that Chromosome 18 Registry and Research Society Europe and the Nystagmus Network, two tiny charities, can continue to offer support to families just like James’s, please sponsor the boys today.
CLICK THIS LINK TO SPONSOR JAMES. Thank you!
Could you take the plunge and abseil down from the 262 feet high viewing platform at the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park? It’s an exhilarating descent to the ground, with a breathtaking 20 mile vista across London, including iconic buildings such as the Gherkin, St Paul’s Cathedral, Canary Wharf and Wembley Stadium, as well as the world famous sporting venues at Queen Elizabeth Olympic Park.
It surely is a once in a lifetime challenge!
The Nystagmus Network is partnering with Moorfields Eye Charity to raise money for nystagmus research at Moorfields Eye Hospital, where Mr Vijay Talyor is currently investigating congenital nystagmus and visual crowding, and its research the partner, the University College London (UCL) Institute of Ophthalmology where Dr Parashkev Nachev is pioneering the use of magnetic implants to control the rapid eye movements associated with acquired nystagmus.
Your fundraising abseil will directly support these and other nystagmus research projects.
Time and date: 8am – 1pm, Sunday 23 September 2018
Registration fee: £50
Sponsorship target: £250
Address: ArcelorMittal, Queen Elizabeth Olympic Park, London E15 2NH
Experience: No experience necessary, all training given on the day
Participants will also receive:
· A fundraising pack full of tips and advice
· Ongoing support from our expert fundraisers
· A Moorfields t-shirt if you raise over £350
· A free photo if you raise over £500
If you think you could take the leap for nystagmus research, please complete the form below.
