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Find all our news here. We will endeavour to keep the news updated but we will need help from the community. If you have anything that you would like to submit as news to the site, then please contact us at our Contact Us  page. 

Our newsletter is available in both PDF and web formats. The newsletter is a seasonal publication, so we hope to have the document available tri-monthly; however, it does not always work out like that. 

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11/14/2018 6:30:29 AM

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Six-year-old girl with Burin Peninsula roots gets 'Perfect' birthday hug from Ed Sheeran - The Telegram

10/30/2018 4:52:16 PM

Six-year-old girl with Burin Peninsula roots gets 'Perfect' birthday hug from Ed SheeranThe TelegramAt two-months-old, after recovering from her first open heart surgery, Scarlett was diagnosed with CHARGE syndrome. Jervis and her husband Kyle were devastated by the news. “We knew she would live a life full of hospitals, therapies, and surgeries ...

A 195-year-old disabled children's charity in Stockport is celebrating a decade of being the Seashell Trust. - The Big UK Newsroom

11/7/2018 1:15:39 PM

The Big UK NewsroomA 195-year-old disabled children's charity in Stockport is celebrating a decade of being the Seashell Trust.The Big UK NewsroomElliot Smith, 16, has CHARGE Syndrome and is profoundly deaf with severe learning and communication disabilities, as well as balance and mobility issues. His parents Angela and Trevor moved from Kingston Upon Thames so he could attend Seashell ...

Mum's tribute to Leila who battled CHARGE Syndrome - Gazette

7/17/2018 8:44:07 AM

GazetteMum's tribute to Leila who battled CHARGE SyndromeGazetteLeila Willmott, from Stanway, was born in 2011 with a condition known as CHARGE Syndrome. It was discovered during mum Ellie's 20 week scan. Before Leila was born at the Queen Charlotte Hospital, in London, Ellie, 27, was told her daughter was not ...and more »

Blind Seneca Valley student makes special announcement for White Cane Day - Butler Eagle

10/20/2018 6:11:50 PM

Blind Seneca Valley student makes special announcement for White Cane DayButler EagleOne of these people is Brandon Wingard, an eighth grade student at Ryan Gloyer Middle School who was born with CHARGE syndrome, iris and retina colobomas, nystagmus and subluxed lenses which all contribute to his diagnosis of being legally blind.

Latest News

National Conference and Family Weekend Announced

National Conference and Family Weekend Announced

Posted on Sunday 18 March 2018

The national conference is a different type of event to the regional family days (which are great!) in that it provides an opportunity for families to attend talks, workshops, and have 1-1 consultatio…

join easyfundraising to help raise money while you shop

join easyfundraising to help raise money while you shop

Posted on Tuesday 9 January 2018

Join easyfundraising and you can collect free donations for us every time you buy something online. It won't cost you a penny extra so please help us to raise funds.

Merry Christmas and a Happy New Year

Merry Christmas and a Happy New Year

Posted on Thursday 4 January 2018

A Christmas message from the Team

The Ultimate Guide to Adapting Your Home If You have Visual Impairment

The Ultimate Guide to Adapting Your Home If You have Visual Impairment

Posted on Thursday 9 November 2017

The Ultimate Guide to Adapting Your Home If You have Visual Impairment