Sign up for the Nystagmus Network Lottery and you’ll be in with the chance to win £25,000 for just £1 per week. There are lots of smaller weekly prizes, too.
All profits, after prizes have been paid, come directly to the Nystagmus Network. This means we can continue our important work providing support and information, raising awareness and funding research.
Thank you
Please sponsor Adam. He’s standing by to run the postponed London Marathon for the Nystagmus Network, as soon as restrictions are lifted.
Adam is running the London Marathon this year, for his daughter, Florence and for all of us.
Adam says: “I am honoured to be running the 2020 London Marathon on behalf of the Nystagmus Network.
‘My little Florence was born with Congenital Nystagmus … As it stands, there is no cure and so it’s likely that this condition will affect Florence’s vision her whole life. It’s unclear by how much or how little, only time will tell.. but for now, Florence hasn’t let it get in her way! Every day, both she and her twin brother amaze us.
‘I hope by running the Marathon on behalf of this charity, I can not only raise awareness of Nystagmus but raise some vital funds, helping the continued research, information and support for families like us.”
Please consider donating your weekly commute, coffee bill or the price of a night out to show Adam your love and support.
THANK YOU!
When my daughter was 6 weeks old a paediatrician at baby clinic told me she was blind. Just like that. No preamble. It was a devastating experience, a cruel message, bluntly delivered.
I went to see my GP, whom I knew well and trusted. She confirmed what I already suspected. My daughter wasn’t blind, but she did have something wrong with her eyes.
My doctor wrote the word nystagmus on a compliment slip and handed it to me. She couldn’t tell me any more. I had so many questions, but she had no answers for me. She made me an emergency appointment (another scary thing to hear at this point) with the ophthalmic hospital. It took two weeks to come through.
There followed a barrage of tests, each more alarming than the last, and at the end of it all we still had nothing but that ugly word, nystagmus.
I keep that compliment slip to this day as a reminder of how far we have all come. It’s what spurs me on to support other parents and raise awareness and understanding of this complex condition.
Since the early 1990s the Nystagmus Network has campaigned for and invested in nystagmus research whenever funding permitted. Thanks to the generosity of our supporters, there has been a substantial sum invested nearly every single year.
In the past 30 years clinicians have gained so much knowledge about this truly Cinderella condition: how to diagnose it, which of the many possible causes may be responsible for it and even how well a child will be able to see. They have also learned a lot about delivering worrying news to a parent.
Today researchers stand poised to unlock genetic secrets, manipulate enzymes and stop nystagmus in its tracks.
We have come this far together in just 30 years, a period which has seen the birth of the internet, the end of apartheid in S Africa, the fall of the Berlin Wall, the credit crunch, a decade of austerity, Brexit and, today, a global pandemic.
Who knows what is to come next for our brave new world? One thing is for sure. The Nystagmus Network will still be here, making your voice heard, working alongside the best brains in the country to find effective treatments and yes, eventually, a cure.
With your help, we can do this.
THANK YOU.
An update of our post doctoral award
For those of you eagerly awaiting news, alongside charity trustees, of the outcome of 2019/2020 applications for the new post doctoral research project into nystagmus, jointly funded by the Nystagmus Network and Fight for Sight, we can now share with you the somewhat disappointing news that the project grant will not be awarded this year.
Research priorities
Sadly, although the applications received were strong and very much in line with research priorities laid out by the charity on behalf of the nystagmus community, the expert members of Fight for Sight’s Grant Assessment Panel found that no application met the stringent success criteria required in this very competitive research arena. A post doctoral award is highly prestigious and offered on a fully peer reviewed basis.
Next steps
For the charity this was initially seen as a setback, but it also serves to highlight our faith in Fight for Sight to carry out due diligence on our behalf and the importance of wise investment in robust research projects which are most likely to yield tangible benefits for those living with nystagmus.
Two new research grants
In consultation with our funding partners, Fight for Sight, the Nystagmus Network has now decided to repurpose the hard won monies already committed to the post doctoral project into funding one post-graduate researcher to address visual impairment associated with nystagmus (a new PhD studentship) and, in addition, to provide a further grant award for a clinical research study focusing on quality of life and one or more of the following: cause (including genetics), diagnostic testing/analysis and treatments.
Funding future research
It is very positive news for the future of research for the Nystagmus Network to be funding PhDs, as it establishes a pipeline of work leading to breakthroughs into treatments for nystagmus.
New time scales
Following a rigorous application process, again overseen by experts at Fight for Sight, we expect to award our PhD nystagmus studentship in March 2021. The additional small grant will be awarded in September/October 2020 or March 2021.
Nystagmus Network Honorary President and chair of the charity’s research subcommittee, Vivien Jones, said:
“Through the new nystagmus PhD studentship we shall be bringing new brain power at a significant level to the nystagmus research table. We are also delighted to be continuing the small grant scheme which is an effective way of supporting research projects.”
You can help us keep investing in nystagmus research by donating to our research fund.
THANK YOU.
From entertainment packages to fitness equipment and more, you can still support the Nystagmus Network from home, by shopping online through #easyfundraising.
Signing up is quick and easy and you’ll raise free donations for us every time you shop online.
THANK YOU!
Want to test your general knowledge?
Think you’re the brainiest person in the whole nystagmus community?
Now’s your chance to prove it!
As well as the glory of winning there are cash prizes for 1st, 2nd and 3rd placed players.
Good luck, everyone!
Sign up NOW.
With marathons, half marathons, 10k and 5k runs postponed, there’s still lots of opportunity to take part in virtual runs and challenges right now.
The Local Landmarks Challenge is a solo, virtual run, around your local landmark. That could be anything from your local church, castle, park, statue or even post-box. You decide the distance.
You even get a medal when you finish!
Sign yourself up to take part and then set up your Justgiving page to collect your sponsorship for the Nystagmus Network.
Stay safe and healthy and enjoy your run!
Are you taking the time at home as an opportunity to clean out some cupboards? Have you been decluttering?
What are you going to do with all your stuff? Sell it on ebay?
Great!
Did you know that every time you list an item for sale you can now nominate the Nystagmus Network to receive a percentage of your sale price? You’ll find us in the drop down menu.
It’s so easy to do and can make a big difference to a little charity like ours.
Your listing will carry a blue and yellow ribbon to show everyone it’s a charitable listing. It might even encourage more people to bid.
THANK YOU FOR YOUR SUPPORT.
Can you believe that it’s THREE MONTHS TODAY since Mike set off on his crazy ‘wiggly walk’ the entire length of New Zealand to raise money for nystagmus research?
And he’s still walking!
In case you haven’t been following his progress that closely, he’s currently in the Auckland area and it’s all got a bit wet.
The above picture shows Mike in his pristine Nystagmus Network T shirt preparing to set off on his Walk for Wiggly Eyes.
The picture below, well, sorry, we have no words …
A huge thank you to all our #easyfundraising shoppers for your support.
Together, you’ve helped us raise £65.40 in February simply by shopping through easyfundraising.
Thank you so much!
