Nystagmus Newsletter- Research funding, fundraising thanks and open days!

NN Logo modified 2013Applications invited for nystagmus research funding

The Nystagmus Network is inviting applications for two new research grants, one of £10,000 and one of £1,500, to improve the lives of people affected by nystagmus. The charity will consider proposals from hospital and university based researchers and clinicians.

The new money is available thanks largely to a substantial donation from the EBM Charitable Trust.

To apply for a nystagmus research award please contact John Sanders, Information and development manager, email: john.sanders@nystagmusnet.org Tel: 029 2045 4242.  The closing date for grant applications is Monday, June 15, 2015.


New research on nystagmus and achromatopsia

The hand held OCT scanner which NN part funded at Leicester University was used in new research on nystagmus and achromatopsia.  Results suggest two things.  Firstly, that gene therapy may one day help treat or even prevent nystagmus.  Secondly, that it won’t be one size fits all. In other words, it won’t be a single gene therapy, but individually targeted therapies depending on the cause of our nystagmus. You can read more online at http://www.aaojournal.org/article/S0161-6420%2815%2900317-6/fulltext#.VVctzjBeW7c.email


Volunteers needed for nystagmus research

Cardiff University researcher Matt Dunn is looking for 20 or so volunteers over the age of 18 with early-onset nystagmus to take part in two research projects between now and the end of June. You only need to make one visit to Cardiff and travel costs of up to £50 per person are available. Taking part in both studies should take around half a day with plenty of breaks. As part of the research you will have a full sight test by a qualified optometrist with an updated spectacle prescription if you need it.

For more information, or to volunteer, please email Matt at DunnMJ1@cardiff.ac.uk. The Nystagmus Network provides some funding for the research in Cardiff.


Newcastle Open Day

​Gerard McDermott gave a very honest and amusing account of living with nystagmus.  We heard about a promising contact lens trial at Moorfields Eye Hospital in London and about the direction of future research, in particular in the field of genetics. Then there were sessions on education, benefits, for parents and about living with nystagmus.

But as ever, one of the biggest pluses for everyone came from talking to and learning from each other. One mum summed the day up “Loads of information re nystagmus as I am new to the issue. Will help me to network with people, seek more information and eventually help my baby. Thank you!”

Guide to DLA, PIP and nystagmus

NN member Mike Hughes and a colleague from Greater Manchester Welfare Rights Advisers Group (G.M.W.R.A.G.) ran two DLA/PIP workshops at our Open Day in Newcastle. They have produced a helpful guide to DLA, PIP and nystagmus https://gmwrag.files.wordpress.com/…/dla-and-pip-materials-…

You can read more about the Open Day session and the work of G.M.W.R.A.G. online http://wp.me/pDiJF-17Y


Fundraising thanks
​A big thank you to all our fundraisers especially our London Marathon runners who between them have raised more than £7,000 – that’s about £53 a mile! Of course these weren’t our only runners and runners aren’t our only fundraisers. As usual we’ll have a comprehensive fundraising roundup and photos in the next edition of our Focus newsletter.

If you are organising an event or are taking part in one for NN we have t-shirts, wristbands, balloons, sponsor forms and can help with publicity through social media.  Please call: 0845 634 2630 or email: Kerry.pleasant@nystagmusnet.org.


Wobbly Wednesday 2015

Save the date – Wednesday 4th November – We’ve started giving out the new supporter packs and have already heard from people planning nystagmus awareness raising events.  Look out for more news about how you can get involved in our annual nystagmus awareness day in the coming weeks.


Footie farewell

It was with a heavy heart that NN patron Steven Reid announced his retirement as a player at the end of the football season. Everybody at NN would like to wish Steven good luck for the future and thank him for his fundraising and support in recent years. Steven will be carrying on with his coaching and media work.


NN on the road

First up is a talk to teachers in Derbyshire on June 9th, then it’s the summer conference season for John Sanders, NN’s information and development manager.  The highlight of the year will see him joining our friends in America at the American Nystagmus Network conference in New Orleans.

Contact John to find out more or invite him to give a talk or training to you and your colleagues. Tel; 029 2045 4242.


Contact Nystagmus Network:

Tel: 029 2045 4242 email: john.sanders@nystagmusnet.org

Helpline: 0845 634 2630, email: info@nystagmusnet.org

Website: http://www.nystagmusnet.org



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