Nystagmus Network Q2 2017 Review 5 August 2017

Projects

Open Day 2017 Nystagmus education route map Wobbly Wednesday 2017 Nystagmus Network Q1 2017 Review 4th March 2017 Current projects Open Day 2017 Nystagmus education route map Wobbly Wednesday 2017 nystagmusnetwork.org

Current projects, contd Nystagmus Network Q1 2017 Review 4th March 2017 Current projects, contd Communication Q2 2017 fundraising Research Support nystagmusnetwork.org

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

Schedule Speakers Delegates AGM/CIO vote Trustee roles Nystagmus Network Q1 2017 Review 4th March 2017 Open Day 2017 Schedule Speakers Delegates AGM/CIO vote Trustee roles nystagmusnetwork.org

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

Speakers Keynote speaker: Jamie Fuller Nystagmus Network Q1 2017 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

Speakers, contd Surgeries: Frances Lilley, Mike Hughes Nystagmus Network Q1 2017 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

Delegates Adults 70/70 Parents 70/70 CYP 40/40 Nystagmus Network Q1 2017 Review 4th March 2017 Delegates Adults 70/70 Parents 70/70 CYP 40/40 We are officially fully subscribed! Sue will email all ticket holders regularly to maintain interest and ensure attendance nystagmusnetwork.org

AGM/CIO vote AGM, agenda needed (Graham et al) Nystagmus Network Q1 2017 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

Trustee roles Please see separate document for suggested roles Nystagmus Network Q1 2017 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

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

Education route map plan Nystagmus Network Q1 2017 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

Wobbly Wednesday 2017

Proposed theme - Swimathon Nystagmus Network Q1 2017 Review 4th March 2017 Proposed theme - Swimathon Inclusive activity Sponsorship opportunity Justgiving campaign Totaliser on WW page of website Social media #nystagmusbigswim nystagmusnetwork.org

Communications

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

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

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

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

Q2 2017 Fundraising

Q2 income from fundraising Nystagmus Network Q1 2017 Review 4th March 2017 Q2 income from fundraising nystagmusnetwork.org

Increase in fundraising Nystagmus Network Q1 2017 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

Research

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 - 26 participants Recruitment for the ‘infancy’ study at Moorfields – 22 participants to date nystagmusnetwork.org

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

Support

Support and information Nystagmus Network Q1 2017 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

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

Nystagmus Network Q1 2017 Review 4th March 2017 Q1 2017 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

Q3 focus

Project focus – Q3 Open Day – a successful event, maximum PR Nystagmus Network Q1 2017 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

Thank you