The Nystagmus Network’s newest trustee, Dr Harshal Kubavat has a young child with nystagmus. Like many parents, he had never heard of nystagmus before. After supporting the charity’s work in the research space as a volunteer for some time, Harsh joined us as a trustee in November 2021. He is now a stalwart of the research committee and also serves with the awareness team, overseeing our major events, such as Open Day as well as the research workshops and Symposium2022.
Are you looking for a new opportunity to put your energy, time, skills and talent to good use? Do you have the passion to support the nystagmus community in all its diversity or lived experience of nystagmus or another form of visual impairment?
If so, please consider becoming a trustee of the Nystagmus Network, a small charity with ambition to grow to meet the changing needs of the nystagmus community.
We are keen to hear from you if you have any of the following:
Trustees are responsible for the strategic direction of the charity and oversee its operations. They also have legal responsibilities under charity law but no personal liability.
The full committee meets on a Saturday four times a year, alternately in person in central London and virtually via Zoom. In addition, trustees are expected to join at least one sub-committee (research, awareness, support and finance). These meet via Zoom either in the evening or daytime every 4-6 weeks. Occasionally, it is necessary for trustees to join a temporary working party to oversee an event, a project or staff recruitment.
The only other time commitments are attendance at the annual Open Day and support for Nystagmus Awareness Day.
Please contact us at [email protected] with a summary of the skills and experience you would like to offer. We will be in touch. If you would like to find out more before making a commitment, please contact us at the same email address to request an informal chat with Tim, our chair.
We welcome interest from people with and without nystagmus.
All appointments are subject to a DBS check.
Trustees play an essential role in the running of the Nystagmus Network. Whilst it is not a role to be taken on lightly and may be demanding of time and skills, especially within a small organisation like ours, it can be rewarding for many reasons. Meet our trustees here.
The charity’s trustees share ultimate responsibility for making sure the charity is fulfilling its charitable objectives, and that all decisions put the needs of the nystagmus community first.
Becoming a trustee is a great opportunity to make a contribution. As a trustee you can guide the direction of the charity’s growth and have the opportunity to make a significant impact on an issue of value to you personally. It undoubtedly also offers professional development and the opportunity to work within a diverse team in support of the same cause.
If you would like to become a trustee of the Nystagmus Network and have skills in
please email [email protected]
Do you have the digital know how to take the Nystagmus Network up to the next level?
The Nystagmus Network is keen to recruit a new trustee with the right skills set.
If you have a connection with nystagmus, have digital experience and expertise, could easily travel to London for quarterly meetings and would be interested in joining our strategy team, please get in touch.
Without the dedication of just one woman, Vivien Jones, our Founder and Honorary President, the Nystagmus Network would not exist.
Vivien is supported by a strong team of Trustees, all volunteers.
Find out more about our trustees, here.
Nystagmus Network trustees Claire Brinn and Vicky Pitman and Vicky’s husband, Richard finally completed their abseil for nystagmus research on Sunday, 28 October. They scaled down the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park.
The final 3 of our fabulous team of 10 abseilers finally took their leap for nystagmus, following postponements due to the very British weather.
It was a chilly day, but at least there were no high winds or lashing rain to deter them this time and our courageous trio were all smiles for the camera.
The Nystagmus Network is indebted to all 10 of our abseilers who are all now safely back on the ground: Claire A, Claire B, Glen, Matt, Richard B, Richard P, Tom, Vanessa, Vicki and Vicky. Together they have raised around £7,500 for ground breaking nystagmus research at Moorfields and UCL.
Nystagmus Network trustees Peter Greenwood and Sam Jones completed the London Vitality 10k on Bank Holiday Monday and raised over £1,000 between them for the charity.
Nystagmus Network Chairman, Richard Wilson OBE, added his thanks and congratulations to both runners and commented:
“Brilliant dedication to a great cause.”
