Giving Tuesday is here

Why not take the opportunity today to show the charity closest to your heart just how much you care? All donations are gratefully received, especially today, but there are lots of other ways you can lend the Nystagmus Network your support, too:

Those are just some of the ways we’d love you to support us. Thank you for stopping by and showing us your support on Giving Tuesday.

#YouMadeItHappen – Glen

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Glen and the whole abseil team – you helped make that happen!

Today the whole nystagmus community says thank you to you.

#YouMadeItHappen – Steph

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Steph – you helped make that happen!

Today the whole nystagmus community says thank you to you.

Simon in Nystagmus Network T shirt.

#YouMadeItHappen – Simon

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Simon – you helped make that happen!

Today the whole nystagmus community says thank you to you.

Jay Self wearing scrubs.

Does albinism protect against AMD?

We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism. Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. If you or anyone you know fits the bill, please read on …

Jay and Helena are seeking to understand two questions which have baffled researchers for some time and they need your help:

1.       Why has Albinism and Age Related Macular Degeneration (AMD) never been seen in the same patient when AMD affects 1/3 of people over 75? Are people with Albinism protected from this condition?

2.       Why does the retina lose function late in older animals with Albinism, but apparently not in humans?

If anyone with Albinism, who is over the age of 60, would like to help Jay and Helena find answers to these important questions, please complete the form below. Please note that by completing the form you are giving us your permission to pass on your details on to the relevant research team.

Thank you.

Nystagmus Research Conference 2018

The Nystagmus Network is hosting a nystagmus research conference later this year. Delegates are senior researchers, academics and clinicians from the top UK nystagmus research centres, with expertise in testing and diagnostics, genetics and technological intervention. We will also be joined by a representative from Fight for Sight, our research funding partner.

Agenda items include an exploration of further collaboration opportunities between centres to ensure that teams are working together to maximise results, overcoming the challenges of the next 5 years in respect of resources and funding and a session on blue sky thinking.

In the words of one senior researcher: “Prevention is still a way off, but we will get there. That’s why I’m here.”

 

Seeing Beyond The Eyes

The Nystagmus Network is pleased to share this guest post from our friends at Visualise Training and Consultancy. The new guide ‘Seeing Beyond The Eyes’ includes details of the charity’s services and our contact details so that patients with nystagmus can find us easily for information and support.

Eye care and Health Professionals armed with information to improve lives of patients with sight loss

A free resource pack for eye care and health professionals containing valuable information on sight loss support services, charities, equipment and referral pathways has been produced by Visualise Training and Consultancy  with the support of Thomas Pocklington Trust.

The pack complements the ‘Seeing Beyond the Eyes’ CET workshops  currently touring the UK which raise awareness of the difficulties faced by patients diagnosed with irreversible sight loss. It contains valuable information on local sight loss charities, Eye Care Liaison Officers (ECLO),Vision Rehabilitation Workers, low vision assessment services and Habilitation Workers. It also lists national organisations supporting people with sight loss and condition specific charities. Daniel Williams of Visualise said “It is vital patients with sight loss are referred immediately to sight loss services that can enable their independence and help them deal with a difficult time in their life. However Optical professionals can’t refer if they don’t know who they are referring hence why we have created such a resource pack and training roadshow.At the age of 8, I was diagnosed with Retinitis Pigmentosa, a gradual loss of sight, and had consultations with Dispensing Opticians, Optometrists and Ophthalmologists and at no point was I referred to any support services which is why I am so passionate about empowering eye care professionals with the awareness of what is available for people with sight loss to live independent lives”

Links to professional resources are also included such as the Government’s Access to Work grant scheme, an A – Z list of eye conditions and Thomas Pocklington Trust’s guide to designing a home for someone with sight loss.

Charles Segal, Dispensing Optician from D and H Hantman Optometrists said “It was one of the best CET courses, I have attended. “I had no idea that there was such a range of services, it made me fully aware of where we can send people and not just refer to the eye hospital. It was a highly informative meeting where the attendees actually met people who are dealing with or have dealt with people with sight loss,it was the first time I have actually met someone who has Retinitis Pigmentosa. It was moving and inspiring to hear how people with low vision get-on with their lives. The course has given me the confidence to help people who enter my practice and give them advice. The details of suppliers of low vision aids and daily living solutions are also invaluable for people facing sight loss during their transition to a different way of life”.

The pack can be downloaded free of charge by clicking here

For more information on Visualise Training and Consultancy visit their website

You could win £450 for the Nystagmus Network

SMALL CHARITY WEEK begins on Monday 18 June. If the Nystagmus Network is your favourite small charity, why not enter the Facebook, Twitter or Instagram competition to help us win £450?

How to enter:

Take a photo of yourself holding up your Small Charity Week poster that reads:

“I love Nystagmus Network because (and say why you love the charity)”.

Then simply post it to either Twitter, Instagram or the Small Charity Week Facebook page, depending which competition you want to take part in. Make sure you include the #ILoveSmallCharities hashtag when you post your photograph.

Thank you for your support in SMALL CHARITY WEEK!

You can download your poster here.

Join Easyfundraising.com and raise donations for the Nystagmus Network every time you shop online

We all shop online, but did you know that, by signing up with Easyfundraising.com you could be raising money for the Nystagmus Network – and it doesn’t cost you a penny. You could also take advantage of some great deals.

We already have a growing group of shoppers collecting a few pence, or even a couple of pounds, for us every time they do their weekly shop online, book their holiday or order their next good read. You can use the site to shop with all your favourite online retailers.

So please join Easyfundraising.com today and we can all watch those pennies add up!