Neurofibromatosis

From skydiving in Hawaii to swimming with turtles: Woman, 28, given just five years to live embarks on a worldwide adventure to tick off items on her bucket list – Daily Mail

A terminal cancer sufferer is determined to defy doctors’ five years to live prognosis thanks to her…

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Call for ‘scores on the doors’ disability access ratings – BBC News

A “scores on the doors” system should be introduced to rate disabled access for surgeries, shops and restaurants, campaigners have said. About 2,000 people…

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Mum’s pride at her “tough little cookie” – North Wales Chronicle

AN Anglesey mum has spoken of the bravery of her “tough little cookie” son who is suffering with a rare genetic condition. Nine-year-old Koren…

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Raising awareness through art – Norfolk Daily News

When her son was just 4 months old, Rachel Mindrup got news no mother wants to hear. Her baby, Henry, had an unpredictable, progressive,…

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A cluster of mutations in neurofibromatosis is an important risk factor for severe symptoms – The University of Alabama at Birmingham

Research led by Ludwine Messiaen, Ph.D., professor of genetics at the University of Alabama at Birmingham, shows that missense mutations in a cluster…

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Uber fires driver accused of canceling a ride because of customer’s appearance – WPTZ

Reggie Bibbs was diagnosed with Neurofibromatosis, which causes tumors to form, even on his face. Bibbs says he ordered a ride to take him…

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Young mum shares heartbreaking video of daughter, 2, in desperate bid to raise money for brain tumour treatment in the US – The Scottish Sun

A YOUNG mum has shared a heartbreaking video of her little girl’s cancer treatment in a race against time to raise £300,000 to…

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Glasgow families of disabled children face big financial pressures – Evening Times

Glasgow Families of Disabled Children Face Financial Issues GLASGOW has been named as one of the areas in the UK with the highest percentages…

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Neurofibromatosis, Northeast in Medford receives grant from Harvard Pilgrim – Wicked Local Medford

Harvard Pilgrim Health Care Foundation recently announced that Neurofibromatosis, Northeast in Medford was awarded $500 from the Foundation’s Community Spirit 9/11 Mini-Grant program. Mary…

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It’s for charity! The Bachelorette’s Apollo Jackson and Survivor’s Flick Egginton strip down for racy shoot to raise money for neurofibromatosis – Daily Mail

Neurofibromatosis Charity gets fan favourites, The Bachelorette’s Apollo Jackson and Australian Survivor’s Felicity ‘Flick’ Egginton to strip down for charity. The genetically-blessed duo, who were friends…

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Parents face race to raise £300000 in bid to save Poppy’s life – The Southern Reporter

A Hawick soldier and his former partner are in a race against the clock to raise £300,000 needed to save the life of…

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Chorley mum asks well-wishers to help poorly Jessica celebrate her birthday in style – Lancashire Post

A mother whose daughter has a number of health difficulties is appealing to well-wishers in Chorley to send her birthday cards. Jessica Brown…

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Sick tot has life turned around thanks to hugs from therapy dog – Scottish Daily Record

A boy with a condition which means tumours can grow at nerve endings anywhere in his body has had his life turned around…

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4-year-old Ryder gets his wish to go to Disney World – St George News

At 4 months old, Ryder Spears was diagnosed with neurofibromatosis, a genetic disorder that affects almost every organ system in the body. “It develops…

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£7k crowdfunding goal of aspiring England wheelchair footballer – Swindon Advertiser

A WHEELCHAIR footballer who aspires to play for his country is attempting to crowdfund £7,000 to raise money for the power chair that…

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‘Nobody would want to marry this face’: Teenager with giant facial tumours dreams of dressing up as a bride but lives as a recluse because of cruel taunts from strangers about her condition – Daily Mail

A teenage girl revealed she hasn’t left her house in years because she is bullied over her giant facial tumours. Rubi Dulari, from India,…

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Our evening at the National Diversity Awards – The Voice Online

ROLE MODELS and charities were honoured nationwide at the recent National Diversity Awards (NDAs) ceremony at the breathtaking Liverpool Anglican Cathedral, rewarding Britain’s…

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Bridgwater parents of ‘inspiring’ boy in public appeal for charity fundraiser – Somerset Live

The parents of an inspirational child are encouraging everyone to wear their jeans to work and school. As part of a fundraising day ‘Jeans…

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Rochester boy named national NF Champion while battling genetic disorder – Post Bulletin

Gus Erickson’s super power is making doors open with the wave of a finger. It may sound silly, but the 5-year-old Rochester boy doesn’t…

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Warden Bay: Mum Cheryl Fenton abseils down tallest building in Portsmouth for son Dylan – Kent Online

A mother abseiled down the tallest structure in Portsmouth to raise money for her son who is recovering from surgery to remove a…

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