Hope and support -- What does being NN Information and Development Manger involve? I'm NN's only employee, so it's varied. I answer questions by email, phone and letter. Many people want support - just knowing they're not alone with nystagmus makes a big difference. Parents ask what the future holds for their children. Some questions are specific - about DLA (Disability Living Allowance), education, the best hospitals, research, driving, employment or education.
"GVIS (Gwent Visual Impairment Service) arranged for John Sanders to give us a talk on Nystagmus - that was so useful. I thought I was fairly bright with 3 degrees but honestly John puts me to shame he has accomplished so much he really is an inspiration. Keep positive things I'm sure will get better." - from the NN forum April 2010.
Knowing what it's like-- But it's not just parents and people with nystagmus who contact NN. We hear from professionals too. Teachers, social workers and healthcare staff all want to know what it's like to have nystagmus and how to help students, clients and patients. So, another part of my job is giving talks and lectures.
"The more we work with nystagmus children, we realise the more information we get the better we will be. They still come out with things that stop us totally in our tracks." - VI support teacher.
Written word-- As a journalist by training, not surprisingly I'm responsible for our written information too. That includes this website, writing new material and keeping an eye on our online forum (insert link).
"We found your information pack very helpful- thank you very much for putting together such an informative pamphlet." - NN parent member.
Excellent back-up -- But don't think I do everything. NN has a fantastic committee and dedicated volunteers. Between them they run our database, membership, fundraising, finances, online shop and sales, media relations, research initiatives, corporate governance and organise events like our annual Open Day.
Observant granny-- I was more than a year old when doctors in Cornwall confirmed what my grandmother in Wales had noticed already. There was something wrong with my eyes and it was called nystagmus. My dad was in the RAF, so we moved around when I was a child and saw lots of eye doctors, even the Queen's ophthalmologist in Edinburgh. But in the 1960s the medics had only a sketchy understanding of nystagmus.
Memorable day-- By the 1980s I had a degree from Liverpool Polytechnic and was working as a translator in London. One summer evening, I went south of the river and for the first time talked to others with nystagmus. The occasion was an early meeting of the Nystagmus Action Group (NAG) - which later became the Nystagmus Network. It remains one of the most memorable days of my life.
Fine tradition-- NN has come a long way since then and so have I - despite not being able to drive. I've travelled around Europe, worked as a journalist and returned to Wales. In 2009, the committee appointed me Information and Development Manager - the fourth person to hold the post after Claire Entwistle, Helen Connor and Paul White.
Like Claire, Helen and Paul before me, I'm here to help, so do get in touch by email or phone. I work part time for NN, so leave a message if you don't get a reply immediately and I'll call you back.
Tel: either 0845 634 2630 or 029 2045 4242 (whichever number is cheaper for you).