Project information

Nystagmus Network Open Day 2017

Our aims to bring together all the people in the United Kingdom who are affected by the complex eye condition called nystagmus. It enables everyone affected by this debilitating condition to come together to hear the latest updates on the research and support opportunities.

The project will be held for one day

Charity information: Nystagmus Network

Nystagmus Network logo
  • Need


    The feeling of loneliness for someone who suffers from a visual impairment is very common, more so when it is due to a relatively rare condition. The affects of nystagmus can result in someone losing their independence and reliant on someone else to help them complete every day tasks. In children, nystagmus can lead to social isolation as their “wobbly” eyes make them stand out in the crowd when compared to their peers.


    At the Nystagmus Network we bring together all those who suffer from nystagmus at our annual Open Day. This event is an important date in the nystagmus community as it allows those people and their families to meet others who suffer from the condition. At the Open Day the charity facilitates the attendees at making new friendships to counter the feelings of isolation and to enable everyone to have someone they can turn to in a time of need.

  • Aims

    Aim 1

    Counter isolation – the event allows for new friendships and contacts to be made.


    » During the event there are extensive networking opportunities to meet people of the same ages and background.
    » Presentations are given to highlight how someone can overcome isolation in various settings, such as in the work place and at school.
    » Speakers with nystagmus give talks about how they overcome and conquered any problems they encountered in relation to having the condition.

    What success will look like

    Feedback from attendees will be monitored and the aim will be that more people take part in activities outside their comfort zone. We want to challenge them to try new things.

    Aim 2

    Update the community – the nystagmus community is provided an update on the research into it


    » Researchers who are looking into the development of treatments into nystagmus are given the opportunity to present their work to the attendees.
    » All of the latest research is displayed during poster session to provide project specific updates.

    What success will look like

    The community will be able to display a great knowledge of the research that is being undertaken and more people take part in clinical trials for the condition.

    Aim 3

    Celebrate successes - we focus on those who have achieved remarkable things.


    » The entire event has been designed to empower the community so that they do not see their condition as a barrier.
    » Speakers (both teenagers and adults) with inspiring stories about the condition address the attendees,

    What success will look like

    More people will be empowered and will send their success stories for us to share with the nystagmus community.

  • Impact


    The long-term changes from the Open Day event are that more people with nystagmus feel empowered to try new activities outside of their comfort zone. We want to change the mindset of our community from an “I can’t” attitude to an “I’ll try that” attitude. It is important that those people with nystagmus are able to take control of their visual impairment and to achieve their full potential in life.


    The main risks are ensuring that enough people attend the event. In the past attendees have had to pay for the event but we want to offer it for free so that it is open to everyone who is affected by nystagmus. Location is another risk as there will always be people who are unable to travel long distances. For these reasons we have selected Birmingham as it is the most central point in the UK with good rail and road links.


    We will report back to the donors the results from a survey that we always hold post event. This will highlight whether our attendees enjoyed the event, whether it was a success and if the location was convenient.

  • Budget

    Budget - Project Cost: £10,000

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      Amount Heading Description
      £7,500 Delegate rate Day delegate rate for 250 attendees at £30 each - this includes venue hire and food
      £750 Creche Creche for 30 children under the age of 8
      £1,250 AV Audio visual services not provided by the venue
      £500 Photographer & printed Photographer to document the event and printing of the event brochure
  • Background


    The Nystagmus Network Open Day has historically been moved around the country at different locations to ensure that everyone has the opportunity to attend at some point. As we are hoping to secure funding to make this a free event for our community, we have chosen to host it in Birmingham as this is the most central point in the UK with good transport links.


    We hope that the entire nystagmus community will benefit from the Open Day. Our focus will be on empowering attendees and to help them overcome any feelings of isolation they have through helping them make contacts with people who are in the same position. Our aim is that they will then tell other people with nystagmus about the impact the event had on them so that the reach of the event is larger than just those who attended.

  • Why Us?

    Why Us?

    The Nystagmus Network is the oldest charity in the work supporting people with nystagmus. Our focus is supporting those with the condition in the UK, although we do have contacts and offer assistance to those abroad. The charity has a network of over 7,000 people with the condition and whom we communicate regularly with through our social media and digital newsletter. Our aim on empowering those with nystagmus is vital in ensuring an event like our Open Day is a success.

    Read more about the Charity running this project.


    Daniel Lewi

    Daniel is the Executive Information and Development Manager at the charity and it the lead co-ordinator of the event.

    Sue Ricketts

    Sue is the Information Development Officer at the charity and will be assisting the event and will be the direct contact for attendees.

    Richard Wilson

    Richard is the Chairman of the charity and plays a vital role in recruiting speakers to the event and promoting the Open Day to the community.

    Nigel Allen

    Nigel is a trustee at the charity and will be assisting the members of staff at organising the event.

Every year the Open Day gives me the opportunity to see how inspiring the nystagmus community can be!

John - parent