1. Nystagmus Network
Q Review
5 August 2017

2. Projects

3. Open Day 2017 Nystagmus education route map Wobbly Wednesday 2017
Nystagmus Network Q Review
4th March 2017
Current projects
Open Day 2017
Nystagmus education route map
Wobbly Wednesday 2017
nystagmusnetwork.org

4. Current projects, contd
Nystagmus Network Q Review
4th March 2017
Current projects, contd
Communication
Q fundraising
Research
Support
nystagmusnetwork.org

5. Open Day 2017 Sue is working to a project delivery plan,
shared with the awareness committee

6. Schedule Speakers Delegates AGM/CIO vote Trustee roles
Nystagmus Network Q Review
4th March 2017
Open Day 2017
Schedule
Speakers
Delegates
AGM/CIO vote
Trustee roles
nystagmusnetwork.org

7. Schedule Nystagmus Network Q1 2017 Review 4th March 2017
Time
Children (Peter)
Adults (Sam)
Parents (Frances)
09:00
10:00
Registration and coffee: Sam, Graham (Peter to ‘man’ lift)
10:15
Introduction to the conference: Richard
10:45
Creative arts: Claire
Using social media: Sophie
Making the most of education: Rory
11:15
Motivational speaker: Sophie, Wil
Local support services: Nicky at ESS
Raising aspirations: Sue, Sara
11:45
Creative arts
Overcoming social isolation: Flora
Choosing a career: Sophie, Wil
12:15
Q+A: all
14:00
Lunch, tea with a trustee, surgeries, photo exhibition, education taster, networking: all Trustees, Frances, Mike, Dave, Louise (Sue to co-ordinate)
14:30
Research updates - max 5 mins per team: Jay Self, Jon Erichsen, Rebecca McLean, Chris Harris, Helen Griffiths, Maria Theodorou Vivien, chair (Graham)
15:00
Charity highlights 2017, the charity story, tribute to Steve: Richard, Vivien
15:30
Keynote speaker: Jamie Fuller (Josh), Richard to introduce and thank
16:00
Fundraising awards: Richard, Peter
16:30
AGM/CIO: Richard, chair (Vivien, Graham) and all Trustees
17:00
Coffee, networking, depart: all Trustees, all speakers and researchers
nystagmusnetwork.org

8. Speakers Keynote speaker: Jamie Fuller
Nystagmus Network Q Review
4th March 2017
Speakers
Keynote speaker: Jamie Fuller
Children’s workshop: Claire Gillespie, Wil Maudesley, Sophie Brown
Adults’ workshop: Sophie Brown, Nicky at ESS, Flora Raffai
Parents’ workshop: Rory Cobb, Sara Riggs, Sue Ricketts, Wil Maudesley, Sophie Brown
nystagmusnetwork.org

9. Speakers, contd Surgeries: Frances Lilley, Mike Hughes
Nystagmus Network Q Review
4th March 2017
Speakers, contd
Surgeries: Frances Lilley, Mike Hughes
Exhibitors: Dave Brogan, Louise Connop
Research teams: Sheffield, Cardiff, Plymouth, Southampton, Leicester and London
nystagmusnetwork.org

10. Delegates Adults 70/70 Parents 70/70 CYP 40/40
Nystagmus Network Q Review
4th March 2017
Delegates
Adults 70/70
Parents 70/70
CYP 40/40
We are officially fully subscribed!
Sue will all ticket holders regularly to maintain interest and ensure attendance
nystagmusnetwork.org

11. AGM/CIO vote AGM, agenda needed (Graham et al)
Nystagmus Network Q Review
4th March 2017
AGM/CIO vote
AGM, agenda needed (Graham et al)
CIO vote (Peter advising, all trustees to attend, Sue to recruit members – 10% of membership needed)
nystagmusnetwork.org

12. Trustee roles Please see separate document for suggested roles
Nystagmus Network Q Review
4th March 2017
Trustee roles
Please see separate document for suggested roles
‘Take tea with a trustee’ – approx 5 minutes per person throughout extended lunch break
All trustees to attend AGM/CIO vote
All trustees to stay on for networking till 5pm
nystagmusnetwork.org

13. a visual reference tool supported by a document
Education route map
a visual reference tool supported by a document

14. Education route map plan
Nystagmus Network Q Review
4th March 2017
Education route map plan
Most documents already drafted
Sue to complete section on university applications
Frances to complete final drafts and seek peer review
Publication to website by 31 October
nystagmusnetwork.org

15. Wobbly Wednesday 2017

16. Proposed theme - Swimathon
Nystagmus Network Q Review
4th March 2017
Proposed theme - Swimathon
Inclusive activity
Sponsorship opportunity
Justgiving campaign
Totaliser on WW page of website
Social media #nystagmusbigswim
nystagmusnetwork.org

17. Communications

18. Our online presence Nystagmus Network Q1 2017 Review 4th March 2017
nystagmusnetwork.org

19. Our online presence Nystagmus Network Q1 2017 Review 4th March 2017
nystagmusnetwork.org

20. Our online presence Nystagmus Network Q1 2017 Review 4th March 2017
nystagmusnetwork.org

21. Nystagmus Network Q1 2017 Review
4th March 2017
Our online presence
1,783 subscribers to Focus e-newsletter – maintained from Q1
1208 orders through Shopify (March – July 2017) – overall increase, with a peak in March
8,795 ‘likes’ on Facebook in July, up by almost 9%
nystagmusnetwork.org

22. Q Fundraising

23. Q2 income from fundraising
Nystagmus Network Q Review
4th March 2017
Q2 income from fundraising
nystagmusnetwork.org

24. Increase in fundraising
Nystagmus Network Q Review
4th March 2017
Increase in fundraising
Doubled since Q1 2017
Better supporter engagement
Friday Fundraiser spot
Free merchandise
Thanking
NB. Q3 figure is to date only!
nystagmusnetwork.org

25. Research

26. Nystagmus Network Q1 2017 Review
4th March 2017
Projects
Recruitment for the ‘magnets’ study at UCL into AN – 3 participants
Recruitment for the ‘social attachment’ study at CoL university participants
Recruitment for the ‘infancy’ study at Moorfields – 22 participants to date
nystagmusnetwork.org

27. Nystagmus Network Q1 2017 Review
4th March 2017
Published article
Dr Nachev of UCL published his article on the initial magnets study, mentioning partnership with the Nystagmus Network
nystagmusnetwork.org

28. Support

29. Support and information
Nystagmus Network Q Review
4th March 2017
Support and information
Enquiries via website contact form
All responses by Sue
Peer to peer volunteers under review
Replies to Facebook inbox and comments in addition, by Sue and Trustees
nystagmusnetwork.org

30. Q1 2017 vs Q2 2017 Nystagmus Network Q1 2017 Review 4th March 2017
nystagmusnetwork.org

31. Nystagmus Network Q1 2017 Review
4th March 2017
Q vs Q2 2017
Overall number of enquiries received and dealt with has increased in every category
The number of enquiries from parents has more than doubled
The number of enquiries from adults with CN has more than trebled
The spike in ‘other’ enquiries is due largely to Open Day
nystagmusnetwork.org

32. Q3 focus

33. Project focus – Q3 Open Day – a successful event, maximum PR
Nystagmus Network Q Review
4th March 2017
Project focus – Q3
Open Day – a successful event, maximum PR
Wobbly Wednesday – launch and lead up
Tribute to Steve – national photography competition
Research – new Southampton project, recruitment begins at Open Day
Nystagmus Education Route Map - publication
nystagmusnetwork.org

34. Thank you