Month: January 2017

Become a member of the Nystagmus Network

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.

The first is by paying for a yearly membership via Shopify which costs £20.

The second option is by setting up a monthly payment via Justgiving where you can decide how much you would like to pay.

Nystagmus Network membership benefits

And what are the benefits to you as a fully paid up member of the Nystagmus Network?

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.

Want to become a trustee at the Nystagmus Network?

As we all go into 2017, are you looking for a new opportunity to give your energy, time, skills and talent to support the Nystagmus Network? We need people to join our team of volunteer Trustee to guide and direct the Nystagmus Network. Trustees have particular legal responsibilities under charity law. The skills, talent and experience we are particularly interested in are:-

  • Charity governance and legal expertise
  • Financial knowledge and accounting
  • Research commissioning and review expertise
  • Risk management and auditing
  • Fundraising – and energising others

As a minimum commitment, Trustees need to be able to attend meetings in London on a Saturday once a quarter, and to join other meetings of at least one of our sub-committees by phone perhaps every two months or so, and have the time to invest in some support work and planning activity, probably taking up a few more hours a month. We will meet reasonable travel expenses.

If you have time to give us, then please drop us an email at [email protected] with a brief summary of your skills and what you can bring to the charity to help us grow and develop.  We would like to start talking to prospective new trustees from the end of January.

If you have any immediate questions, then feel free to contact our Chairman, Richard Wilson, on 07964 887 104.

An inspiring story about passing exams!

We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom.

Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from Nystagmus Network Trustee and Education Advocate, Frances Lilly and Rory Cobb of the RNIB.

When Meg first approached the school and the QTVI, there seemed to be little advice or information available about adaptations and support for Lily to take the test. Could it be that some teachers do not expect children with a visual impairment to have aspirations to become academic high flyers?

What began as a two paragraph note from the QTVI about, among other things, blowing up the test papers on to A3 paper, ended as a four page document of detailed instructions on how different parts of the examination, including a multiple choice test on the computer, could be adapted and made accessible for Lily, in particular being printed on manageable A4 pages, giving her an equal opportunity to succeed alongside her fully sighted class mates.

“The opportunity to discuss the exam with Frances and Rory was invaluable. I could voice my concerns and they helped me to identify issues and offer suggestions/solutions to the school. It also gave me the determination to make sure that Lily had an equal chance when sitting the exam.” – Megan

Lily is a confident girl and was not sure that she would need the 25% additional time she was entitled to. This is not uncommon among VI students who do not want to appear to their friends to have any kind of special need. Like many other parents, however, Meg managed to convince Lily that the time could be very useful to her and could be used to check her answers and make sure she had not missed out any questions.

On the day of the test Lily triumphed. There was a slight hitch with the computer screen and Lily admits that she may have had to guess the answers to a couple of the multiple choice questions, but she passed. This ambitious young lady is now set on a path of high academic achievement thanks to her Mum, the RNIB and the Nystagmus Network.

If you or your child have a similar experience to Lily and Megan, or would like to share a story with the nystagmus community please get in touch with us!