Nystagmus Network Chairman, Tim Cuddeford has sent a Christmas message to members of the Nystagmus Network.
Tim spoke of the challenges that 2020 has brought for everyone, not least the nystagmus community, but also highlighted the successes the charity has been able to achieve, thanks to the support of our intrepid fundraisers and donors and the generosity of National Lottery players and those who donated to the charity’s BBC Radio 4 appeal. The team has continued to provide support and information services, albeit virtually, and even fulfil research investment commitments, whilst adapting services to meet growing and changing needs.
The charity looks forward to a happier, healthier and safer New Year for all.
If you would like to join the Nystagmus Network as a member, you can find out more here
As a small charity, the Nystagmus Network relies heavily on regular income from membership subscriptions. Over the years our membership has steadily grown and at the same time the cost of subscriptions has remained fairly static. This means that we are supporting an ever growing nystagmus community on a fairly modest income.
To find out more about our membership please check out the video below which features our Chairman Richard Wilson talking about how membership has a big impact on the work we can do at the charity.
We are not planning any increases in our subscriptions
It is important to us to keep membership affordable for everyone, regardless of income, so that they can all enjoy the benefits. What we are trying to do, however, is streamline things a little so that we can be sure of a steady stream of funds to enable us to continue our vital work, supporting those affected by nystagmus and their families, providing information to schools and other professionals, raising awareness of the condition and fostering research into diagnostics and potential therapies.
Having said that, building our membership is important to us in far more significant ways than simply the income it brings. The more people we represent who are affected by nystagmus, or have an interest in the condition, the better able the charity will be to influence real change. Being able to evidence that we represent a large body of nystagmus stakeholders will allow us to be a major player in serious scientific and medical research programmes both in the UK and internationally. It will allow us to apply for major grants to develop our own projects, stage conferences and hold events for families and groups of young people and adults, to help dispel the isolation suffered by those, in particular, affected by acquired nystagmus.
If you are already a member of the Nystagmus Network, even if your subscriptions may have lapsed, we will be writing to you shortly to explain to you how you can help us by paying your subscription in one of two ways.
You have full access to all our downloadable documents for parents, adults and teachers as well as information on benefits via our website here.
You can call on our peer-to-peer support service at any time which means that a member of our trained volunteer team will be at the end of the phone or an email to offer a friendly ear.
You can take advantage of a free place at our annual Open Day, where you can meet up with others affected by nystagmus and hear all the latest news from leading nystagmus experts.
You will continue to enjoy our fortnightly newsletter, Focus, which will drop straight into your email inbox. We welcome contributions from members. So if you have a nystagmus story you’d like to share, please let us know. You can email us at [email protected].
Finally, you will know that as a Nystagmus Network member you are part of a growing body of people shaping the future of nystagmus support, awareness and research.
Thank you again for joining us and please know that your membership is valued.
Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two very well behaved dogs! Nystagmus Network Chair, Richard Wilson, kicked off the event with an ice breaker designed to ensure that everyone had the opportunity to meet another parent, adult or child with nystagmus and also the clinicians and medical researchers who joined us at our Open Day.
Keynote speaker Kristina Venning sought to allay the worst fears of parents with newly diagnosed children as she highlighted the successes of her career in the media.
The well attended and ever popular breakout sessions covered such varying aspects as living with a family member who has nystagmus, building a positive relationship with your child’s school, applying for benefits and the world of work.
Nystagmus Network Information and Development Manager, Dan Lewi, seized the chance to launch the charity’s brand new look, with a new website and logo. Both were received to great acclaim and clearly signaled a new direction and a more positive outlook on the future for nystagmus sufferers everywhere. Photos from the event can be found on our Flickr page here.