London, UK – On Friday, November 15, 2024, the Nystagmus Network, a national registered charity, will be celebrating its 40th anniversary with a Ruby Anniversary Reception at the House of Lords. The charity, which provides support and information to families and adults diagnosed with nystagmus, was founded by Vivien Jones in 1984.
Jones was motivated to start the charity after receiving the devastating news that her infant son had nystagmus, a complex and incurable eye condition. She had never heard of the condition before and found the information she received at the hospital to be inaccurate. Determined to help others in a similar situation, Jones began a self-help group, which eventually evolved into the Nystagmus Network.
Since its inception, the Nystagmus Network has grown significantly, with a strong digital presence and a dedicated team of volunteers, trustees, and staff. Jones remains at the helm of the charity, leading the charge for research and advocating for those affected by nystagmus.
In honor of its 40th anniversary, the Nystagmus Network has been hosting a variety of events and campaigns throughout the year. The Ruby Anniversary Reception, sponsored by The Lord Blunkett, will be the highlight of the celebrations. Guests will include Jones’ family, trustees, volunteers, staff, supporters, donors, and researchers, academics, and clinicians who have worked alongside the charity over the years.
One of the special guests in attendance will be Marsha De Cordova MP, who has nystagmus herself. De Cordova is a strong advocate for the rights and opportunities of disabled and visually impaired individuals. She has been a long-time supporter of the Nystagmus Network and recently accepted a role as an ambassador for the charity.
The Nystagmus Network is thrilled to have De Cordova’s continued support and looks forward to celebrating its 40th anniversary with her and all of its guests at the House of Lords.
For more information about the Nystagmus Network and its work, please visit their website at www.nystagmusnetwork.org.
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