Children pointing at a computer screen.

Volunteer needed

Are you good at IT?

The Nystagmus Network is looking for the right person to offer us some IT support. The skills, knowledge and experience we’re looking for include:

  • Programming languages
  • Common operating systems
  • Software proficiency
  • Web management
  • Data collection

The time commitment isn’t huge, just a couple of hours here and there, but your availability for advice and support would be invaluable. If you’re passionate about nystagmus and the work of the charity, even better.

We can offer you the opportunity to help the charity innovate and develop to meet the growing needs of the wider nystagmus community and our eternal gratitude and admiration.


Please email us today at [email protected]

Want to become a trustee at the Nystagmus Network?

As we all go into 2017, are you looking for a new opportunity to give your energy, time, skills and talent to support the Nystagmus Network? We need people to join our team of volunteer Trustee to guide and direct the Nystagmus Network. Trustees have particular legal responsibilities under charity law. The skills, talent and experience we are particularly interested in are:-

  • Charity governance and legal expertise
  • Financial knowledge and accounting
  • Research commissioning and review expertise
  • Risk management and auditing
  • Fundraising – and energising others

As a minimum commitment, Trustees need to be able to attend meetings in London on a Saturday once a quarter, and to join other meetings of at least one of our sub-committees by phone perhaps every two months or so, and have the time to invest in some support work and planning activity, probably taking up a few more hours a month. We will meet reasonable travel expenses.

If you have time to give us, then please drop us an email at [email protected] with a brief summary of your skills and what you can bring to the charity to help us grow and develop.  We would like to start talking to prospective new trustees from the end of January.

If you have any immediate questions, then feel free to contact our Chairman, Richard Wilson, on 07964 887 104.

Meet our new Nystagmus Network volunteers!

Today we are excited to officially announce our new volunteers at the Nystagmus Network! Earlier this year we started a recruitment drive to find people who were passionate and committed to supporting the nystagmus community as part of our peer-to-peer support model.

The charity was inundated with applications, ranging from adults with nystagmus to healthcare professionals. Following a short review, we are delighted to announce that the following people will be joining the Nystagmus Network as volunteers:

  • Rachel Thomas who is a parent to a child with nystagmus
  • Elizabeth Jones who has recently qualified as an Orthoptist
  • Nikki Espiner who runs the Wobbly Days for Nystagmus Families Facebook group and has a child with nystagmus
  • Jenny Rose who has acquired nystagmus associated with ataxia
  • Julie Stewart who runs the Wobbly Days for Nystagmus Families Facebook group and has a child with nystagmus
  • Jamie Chapman who has congenital nystagmus
  • Sara Riggs who is a parent to a child with nystagmus
  • Penny Marsh who moderates the Nystagmus Network Facebook group and is a parent to a child with nystagmus
  • Leanne Leung who is an optometry student entering the second year at MCPHS University
  • Jen Martin who is based in Canada and will help us signpost families from North America to the appropriate support services and to offer advice

“Volunteers help us support our community!” – Richard Wilson, Chairman of the Nystagmus Network

How to contact our volunteers

Each of our new volunteers will play an important part in the work we do at the Nystagmus Network. They will be a direct link to the nystagmus community and they will be the main contacts for our new call back service the charity offers which can be accessed here.
Along with being very active on social media (such as our charity Facebook page) they will also use their experience and expertise to respond to queries submitted through our website here.

The benefits of our volunteers

One of the main benefits of this volunteer service is that anyone who contacts the charity will be able to speak with someone who completely understands their own personal situation. This means that an adult with acquired nystagmus will be able to speak to another adult with the condition, while a parent to a child with congenital nystagmus will be able to speak with another parent. Through this new peer-to-peer support model we believe we will be able to better support the nystagmus community.

We hope you will join us in welcoming all ten of our volunteers to the charity and we are sure they will make a big difference! If you have any questions about our volunteer service you can get in touch with us here.

Have a great day from everyone at the Nystagmus Network!

Volunteer for the Nystagmus Network

The Nystagmus Network is on the look out for more volunteers to help us support our growing community!

We believe that a peer-to-peer support model will make a huge impact on everyone in the nystagmus community. This model is based on support being provided by people who understand the impact of nystagmus on the various groups the charity supports. We want our volunteers to empower parents, teachers and adults with nystagmus and help us build a team of nystagmus specialists to support further the work of the charity.

The volunteer role

We believe that it is important that we have volunteers who are specialists in particular areas which the charity supports. So, we are asking for those people who are willing to answer any emails and / or phone calls from people from the following groups:

  • Parents – babies
  • Parents – school
  • Advocacy
  • Teachers – early years
  • Teachers – primary
  • Teachers – secondary
  • Adults – acquired nystagmus
  • Adults – congenital nystagmus
  • Fundraising
  • Events
  • Overseas

All volunteers will be required to adhere to our volunteer policy and they will be given training to undertake their role.

If you think you can make an impact and would like to volunteer for the Nystagmus Network please complete the form below. We will be in touch once we have reviewed your application and thank you for supporting the Nystagmus Network!

Application form

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