Since 2014 all UK local authorities are required to put information about services for families with disabled children in a special web page called the Local Offer.
Have you found yours? Do you use it? Is the Nystagmus Network listed as a support service?
We’re trying to make sure that everyone receiving a diagnosis of nystagmus finds their way to support and information from the Nystagmus Network.
Please contact us to let us know how your Local Offer is doing.
Thank you
Children’s author, Tim Pearce who modestly describes himself as ‘the favourite children’s author you’ve never heard of’ joined the Nystagmus Network earlier this week to lead a fun and inspiring story writing workshop for children.
Tim began by sharing his journey to publishing his first book ‘Secret Agent Striker’ and then gave us a sneaky preview, but no spoilers, for his follow up book, due out later this summer. He is currently writing book three in the series.
When asked what spurred him to write, Tim said he has always loved being creative and has a passion for writing strong characters. He also loves a plot twist and tries to cram in as many as he can to keep his young readers on the edge of their seats.
The Nystagmus Network children’s story
Tim then led the children taking part in the online workshop to write their own story, collaboratively, with everyone chipping in ideas for character names, appearance and even the design of their slippers! Tim promises that the nystagmus children’s story will appear as part of his next book.
Raindrops story writing and drawing competition for children
What do raindrops mean to you? What do they smell, sound, feel or taste like? What do they make you think of? How do they capture your imagination?
The Nystagmus Network Raindrops competition celebrates the wonderful creativity of children’s writing and illustration.
The best stories and drawings will be published in a special book which will be available to purchase from September 2021.
The competition is open to all children with or without nystagmus, aged 5 to 14 years. There will be winners in each age category.
Completed entries (entry form plus story and / or drawing on Raindrops writing paper or drawing paper) should be emailed to [email protected] Deadline: 23:59 on Saturday 19 June
There will be some fabulous prizes for the winners of each age category, including books signed by your favourite children’s author. As many stories and drawings as possible will be published in a book which will be available for sale from September.
If your little one is a reluctant writer, why not encourage them by asking friends and family to sponsor them 1p a word?
The next round of small grant awards for nystagmus research is now open for application. The grant, funded jointly by Fight for Sight and the Nystagmus Network is worth up to £15,000.
The Fight for Sight / Nystagmus Network Small Grant Award One award to support clinical research to address visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments.
Applications close on 5 August.
The Nystagmus Network now produces a digital newsletter for Dispensing Opticians and Optometrists. The first edition has just been published, bringing nystagmus news, stories and information directly to high street and community practices.
Did you miss the children’s online writing workshop with fabulous children’s author, Helen Rutter? What a shame. That means you didn’t get to hear all about Helen’s inspiration behind her book ‘The Boy Who Made Everyone Laugh’ and you didn’t get to meet her dog, Billy Whizz!
The first is with ‘Secret Agent Striker’ author, Tim Pearce and the second is with children’s writer and illustrator, Claire Alexander, author of ‘A Little Bit Different’.
Children aged 7 years and up are invited to join a FREE interactive workshop with Tim Pearce, author of Secret Agent Striker. Tim will share his passion for writing, his inspiration and what he plans to write about next. You can send your questions for Tim in advance to [email protected]
Monday 10 May: 4:30 to 5:30pm
The Nystagmus Network welcomes children aged 7 years and up to a FREE interactive online workshop with Claire Alexander, author of A Little Bit Different and her new book A Little Bit of Courage. Claire will share her passion for writing and illustration her inspiration and what she plans to write about next. You can send your questions for Claire in advance to [email protected]
Thursday 17 June: 4:30 to 5:30pm
Twelve year old Georgie will be baking 100 cookies in honour of the memory of Captain Sir Tom Moore this weekend. That’s her #CaptainTom100 challenge to raise funds for the Nystagmus Network.
We’re so grateful for your support, Georgie. We know those cookies are going to be yummy!
To honour the memory of Captain Sir Tom Moore and his amazing fundraising legacy, Leon will be running 100 kilometers over the three day weekend to raise money for the Nystagmus Network research fund.
Thank you so much for your support, Leon and all the very best for your challenge.
This is Harry. Harry is 9 years old. He’s just written his story for the Raindrops story writing competition. It’s about Raindrops and what they make him think of.
Well done, Harry.
We look forward to reading yours and all the other stories in the fabulous Raindrops story book to be published later this year.
Sophie Waltl (Bachelor of Occupational Therapy honours student, Australian Catholic University) is assisting with research on a new assessment that describes vision use in children – the ‘Measure of Early Vision Use’ or MEVU.
The research team are seeking specific feedback from parents / caregivers to understand whether MEVU (which was originally developed for children with cerebral palsy) can / should also be used for children with a visual impairment.
Parents of children with vision impairment aged 0-6 years are invited to complete a short online survey or take part in an online interview to discuss MEVU. The measure can’t be used with children with vision impairment until this stage of the research has been completed.
During the Holy month of Ramadan, the Muslim community take part in fasting. This means that from sunrise to sunset, there is no eating or drinking (not even water).
During Ramadan people often stop putting in eye drops (such as Glaucoma medication, antibiotic drops and lubricant drops) as it is believed this would be breaking fast. The reason people believe this would break the fast is that drops put in the eye can sometimes seep through a passage from the eye to the back of the throat. Once someone stops taking medication or eye drops during Ramadan, often they do not start taking them again as they do not notice an impact.
Stopping medication can be dangerous, especially for those with the eye condition Glaucoma, as daily medication is necessary to lower pressure in the eye. For Glaucoma, lowering pressure is the only adjustable treatment which prevents loss of vision, so stopping taking prescribed medication can cause harmful effects. To prevent vision-loss getting worse with Glaucoma, drops must be used exactly as the instructions say. Daily medication also prevents infection and reduces inflammation after any surgery on the surface of the eye.
During Ramadan, drops can still be taken twice a day in a way that does not break fast by following these steps:
Teaching and practicing this simple method during Ramadan is very important to prevent sight loss getting worse and other eye related issues.
This information has been produced by BAME Vision and shared with the Nystagmus Network by Visionary
