Notes from the Parents’ Forum – October
Thank you to those who joined us for the Nystagmus Network Parents’ Forum this month. It was lovely to see some new faces. I hope we made you feel welcome.
Therapies for nystagmus
There is an ever growing list of therapies which have been claimed to reduce the effects of nystagmus. These include glasses, contact lenses, surgery, bio-feedback, after-image therapy, intermittent photic stimulation, drugs, hypnosis, neck massage and acupuncture. Many of these have not stood the test of time and some are expensive. None claims to cure the nystagmus completely, but some do claim to improve the vision to some extent in some patients.
The Nystagmus Network will continue to search for and investigate therapies which may work and refer to our research and clinical advisers for guidance. Meanwhile, if there's anything you'd like us to look into, something that has worked for you, please let us know.
A parent asked our Open Day panel, for example, about microperimetry.
Tech for All
Guide Dogs has launched ‘Tech for All’ which provides free assistive technology to all children with a vision impairment aged between three and 18 in the UK. To find out more or to apply, please visit: https://www.guidedogs.org.uk/news/guide-dogs-launches-tech-for-all-scheme/
The big news is that we have funding, thanks to a grant from the Thomas Pocklington Trust, for 5 further Parent Power workshops between November 2021 and April 2022.
Parent Power workshops provide an introduction to special education needs support. The aim is to empower you to advocate on behalf of your child with nystagmus to access educational support in school or early years setting. You will receive information on the rights of your child under SEND law, advice on how to access the full range of services available to visually impaired children and an explanation of the EHC plan application process.
There will be ample opportunity to ask questions.
The first dates are now confirmed and booking is open.
For Friday 19 November, please book here: https://www.eventbrite.co.uk/e/195937011877
For Friday 10 December, please book here: https://www.eventbrite.co.uk/e/195967874187
The workshops will be led by Karen, an IPSEA trainer, accompanied by Claire, the Nystagmus Network’s IPSEA trained volunteer education advocate. I will also be there.
Open Day 2021
If you missed virtual Open Day 2021, you can still view the pre-recorded presentations on nystagmus research or nystagmus and sleep using the links in the digital programme. Please email us at firstname.lastname@example.org to receive your copy.
Actor Jessica Jolleys has nystagmus. She has just appeared in the role of Helen Keller in the play 'The Miracle Worker' in Chelmsford. A nystagmus hero to watch out for! Read more about Jessica in this BBC online article from 2019: https://www.bbc.co.uk/news/uk-wales-50603566
Please visit the Nystagmus Network Facebook page regularly to see all our latest news and stories. For example, this week we have shared the brand new video simulation of nystagmus and other forms of visual impairment affecting children. The film was made by the Thomas Pocklington Trust with input from members of the Nystagmus Network adults forum.
Our Facebook page: https://www.facebook.com/NystagmusNetwork
If you haven't already, please join our Facebook group for parents:
Please join us again for the next forum at 8pm on Tuesday 23 November. We will send you the Zoom link shortly before the meeting date.
Till then, best wishes
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