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Neurofibromatosis

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BBC’s The Elephant Man drama attacked for casting non-disabled Stranger Things star in lead role – The Telegraph

The BBC has been accused of Elephant Man “ableism” in a row over the casting for the…

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The perils of living with neurofibromatosis – The Voice Online

A pensioner with a rare skin condition, neurofibromatosis, wants his bulging right buttock to be surgically removed. For…

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Paediatric brain tumours occur more often in children with common genetic syndrome – Brain Tumour Research

According to a study carried out by the Washington University School of Medicine, the frequency of brain…

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Milton Keynes celebrates six inspirational young children at special awards ceremony – Milton Keynes Citizen

Six children who have overcome huge personal challenges have been recognised at a special awards ceremony. The…

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Chicago’s Lighthouses: Shedding light on artists with disabilities – CBS News

Some street art in Chicago is shedding light on the challenges millions of us face every day….

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Woods Cross girl battles rare condition – The Davis Clipper

Rylie Evans seems like any other 6-year-old girl. She just finished kindergarten, loves to dance and has…

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What is neurofibromatosis, what causes Adam Pearson’s condition, what are the symptoms and is there a cure? – The Sun

NEUROFIBROMATOSIS affects around one in 3,000 people – with symptoms ranging in severity. Here’s everything you need to…

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What is neurofibromatosis – Wyandotte Daily

what is neurofibromatosis News: MedisinNo conducted to assess the iPad. in Hispanic adults. Levalbuterol Metered Dose Inhaler. 7gm…

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May is Neurofibromatosis Awareness Month for 1 in 3,000 People Worldwide – PR Web

Neurofibromatosis, or NF, is a genetic disorder that few have heard of, yet it affects over 125,000…

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Winchester father pounds the streets inspired by daughter’s condition – Hampshire Chronicle

A WINCHESTER man inspired by his daughter’s condition has raised more than £4,000 by the running the…

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How an inspirational fundraiser is now focused on herself – Manchester Evening News

Kay Ashton was only nine-year’s-old when she started doing things to help others less fortunate than her. Her…

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Parents’ agony after their toddler son became Britain’s youngest stroke victim aged just 19 months – The Sun

A DAD has described the terrifying moment his son became Britain’s youngest stroke victim. Phil Kerman, 39, said…

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Dad diagnoses 19-month-old son’s stroke thanks to TV advert – The Independent

A father heroically saved his 19-month-old son’s life when he realised that the toddler was suffering from…

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Bransholme dad’s horror as toddler son suffers a stroke – Hull Daily Mail

A dad-of-three has spoken of his horror after his 19-month-old son was rushed to hospital after his…

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Why there need to be more autistic characters in children’s books – The Conversation UK

The children’s writer Michael Morpurgo has written a new novel inspired by his autistic grandson, which is…

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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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Family’s bid to raise awareness of devastating Neurofibromatosis type one (NF1) condition which has affected their young son – Norfolk Eastern Daily Press

It could be fairly minor and be little more than treating a small sore on the skin. But, in the worst-case scenario, it…

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Mum of poorly Fiona, 15, says support from Dundonians has been ‘tremendous’ – Evening Telegraph

Fiona Clark, 15, from the Hilltown, was born with neurofibromatosis — a genetic condition which causes tumours to grow along nerves. Usually the tumours…

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Key Advance in Neurofibromatosis Research Might Result in New Therapies – Genetic Engineering & Biotechnology News

Researchers from the University of Plymouth and Plymouth Hospitals NHS Trust say they have shed light on the role of the normal, cellular…

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Derrie Tustin visited Cranham Primary School to talk about neurofibromatosis and raise money for the Neuro Foundation – Worcester News

A MUM with a rare genetic…

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‘She could have been saved’ Parents of tragic tot Beth Beattie campaign to raise awareness of rare brain condition – Scottish Daily Record

Public health minister Aileen Campbell has paid…

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John Kavanagh launches awareness campaign for Neurofibromatosis (NF) sufferers – Irish Mirror

John Kavanagh today launched a nationwide campaign that celebrates those who live with Neurofibromatosis (NF), a genetic condition that causes tumors to grow…

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Turmeric May Be One of Nature’s Gifts for Neurofibromatosis – Newswire

Curcumin is believed to slow neurofibromatosis progression. This condition actually results from the inactivation of the tumor suppressor gene that leads to tumor…

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Mother of eight-year-old boy with Elephant Man tumour begs other children scared of his appearance to ‘Just come up and say hi’ – Daily Mail

The family of an eight-year-old boy who has a rare tumour growing on his face hope to raise awareness of his illness so…

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The disease that gets under a family’s skin – Irish Times

Kathleen Buckley with her daughter Anna Buckley and granddaughter Rebecca O’Brien, who…

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Colchester seven-year-old has final wish granted after huge public response – East Anglian Daily Times

A little boy who finally lost his battle with cancer will have his final wish fulfilled following a huge public response to his…

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Brother’s art supports boy battling brain tumors – Lincoln Times-News

Haden Edwards works on a piece of art at his home in…

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Blind and deaf author launches second autobiography – Free Malaysia Today

PETALING JAYA: Author and motivational speaker Yvonne Foong has released her second book, a direct sequel to her first autobiography which details her…

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Dying boy, 7, CAN be buried beside tragic mum after well-wishers raise £23,000 to fulfil his final wish – Mirror.co.uk

Filip has been living in Great Ormond Street Hospital since last September…

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Friends, family and villagers rally to raise funds for little Rocco – Leicester Mercury

Friends, family and the people of Thurmaston will come together at the weekend to help a youngster suffering from a rare condition. Little…

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Increased cancer incidence, mortality linked to neurofibromatosis type 1 – Healio

These data confirmed the substantial mortality burden associated with neurofibromatosis type 1 (NF1)-specific cancers, which include central nervous system and peripheral nervous tumors….

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