What Charity asked the Nystagmus Network for tips on how a small charity can make a big impact.
1.What encouraged you to start your charity?
The Nystagmus Network was founded in the early 1980s, by Vivien Jones, a young mum with a baby boy called Sam who was diagnosed with nystagmus when he was 3 months old. Vivien found a complete lack of information available for parents of a child with nystagmus. Today, we all take advantage of having immediate answers to questions via the internet, but back in 1983 there was no Google. Although there were umbrella charities which supported the visually impaired, such as the RNIB, even they had little or no information on nystagmus.
2. What difficulties did you encounter starting out?
Vivien had to undertake her own research and identified that the London Refraction Hospital, now the Institute of Optometry, was taking a lot of interest in nystagmus. She got an appointment. Meeting other families and adults with nystagmus, it became clear there was a need for a group which provided information to families, offered support and gave them the opportunity to meet. The Nystagmus Network was born. Its first meeting was held in 1984 and it quickly achieved media coverage which led to people from around the UK wanting to join. Letters began to pour in. Vivien remembers sitting up late into the night answering them and creeping out into the darkness to post the replies at the post box on the corner of her road. There was a huge unmet need for support, and membership rapidly grew. The group also started to produce leaflets, including a guide for adults with nystagmus and a school form for parents to give to teachers who had a child with nystagmus in their class.
3. Why should people support your charity?
The charity has achieved great things in the last thirty years. It hosts an annual Open Day which brings together the nystagmus community (both families and researchers) and this has grown from a few families to over 200 people attending the Open day in 2019. The Nystagmus Network also plays a prominent role in research into the condition and hosted the first International Research Meeting into nystagmus in 2005. Since then, there have been 3 subsequent meetings and an annual UK workshop, which have seen breakthroughs in understanding the condition and potential treatments for nystagmus. The charity also set up national and international Nystagmus Awareness Day in 2013. The day, celebrated on 20 June, has raised thousands of pounds and put the word nystagmus and the condition on the map.
4. What makes you unique?
Nystagmus is not a rare condition, but until someone they know is born with it or they acquire it themselves, people have usually never heard of it before. The Nystagmus Network is the biggest European patient group for nystagmus. We are a small charity, supporting the 1 in 1,000 people at least living with nystagmus. We are a membership organisation and represent the voice of our members at every opportunity, working alongside teaching professionals, clinicians and research teams as well as supporting parents of newly diagnosed infants, who still need that same support Vivien was looking for, but could not find all those years ago.
5. Do you have any top tips for people starting their own charity?
Starting a charity takes a lot of hard work and dedication. It is never going to be easy, but, if your heart is in it, you will succeed. As founder, Vivien is still very much involved with the work of the charity today. She serves as Honorary President and heads up the charity’s research sub-committee. Her son, Sam, is a charity trustee and in recent years has run the London Marathon to raise vital funding for more research. The charity is built on the dedication of one woman who inspires loyalty, respect, purpose and ambition in the charity’s volunteers and small staff team.
