1. Nystagmus: the everyday impact of weird and wobbly eyes John Sanders, NN development manager john.sanders@nystagmusnet.org 9th November 20121www.nystagmusnet.org

2. Research Leicester University: “Living with nystagmus: a qualitative study.” Published in the British Journal of Ophthalmology (http://bjo.bmj.com/content/early/2012/04/18/bjophthalmo l-2011-301183)http://bjo.bmj.com/content/early/2012/04/18/bjophthalmo l-2011-301183 9th November 20122www.nystagmusnet.org

3. Research findings Nystagmus affects everything Almost half the participants wept while being interviewed 9th November 20123www.nystagmusnet.org

4. Parent “And finally to say that we are indebted to NN and for the incredible support we received when we were completely lost in the wilderness of the medical world.” 9th November 20124www.nystagmusnet.org

5. Adult with CN “I have read the attachment that you sent and I was staggered at my reaction. I sobbed and sobbed for hours with absolute relief.” 9th November 20125www.nystagmusnet.org

6. Adult with AN “People don’t understand. The support and information from people like yourself is invaluable.” 9th November 20126www.nystagmusnet.org

7. Hospital orthoptist “Your leaflets are really helpful. We give them out to parents and they are so grateful. No-one else does anything like this.” 9th November 20127www.nystagmusnet.org

8. The vision problems Poor quality of vision Distance Direction Time Clutter... and vision can change from minute to minute 9th November 20128www.nystagmusnet.org

9. The look problems Wobble Head posture and/or nodding Eye contact 9th November 20129www.nystagmusnet.org

10. Null point 9th November 2012www.nystagmusnet.org10

11. The social problems Low self confidence, negative feelings Socially awkward (not fitting in) Personal relationships Taking part Anxiety about the future 9th November 201211www.nystagmusnet.org

12. Wider impact Family and friends Colleagues Strangers Professionals –Questions so far? 9th November 201212www.nystagmusnet.org

13. How can we help? Flexible information –Website and social media –Phone and email –Publications 9th November 201213www.nystagmusnet.org

14. How can we help? Flexible information Peer group support –Face to face contact –Virtual contact through social media and website –Personal experiences in newsletters, etc 9th November 201214www.nystagmusnet.org

15. How can we help? Flexible information Peer group support Knowledge = ownership = confidence 9th November 201215www.nystagmusnet.org

16. Thank you “Had it not been for NN I don't know what we would have done. I think just knowing you are not alone is a massive comfort.” Any questions? 9th November 201216www.nystagmusnet.org