This page contains recent news articles, when available, and an overview of Leukodystrophy but does not offer medical advice. You should contact your physician with regard to any health issues or concerns.

News: Leukodystrophy

They're Keane on showing love for ill toddler  -  23 Nov 2009
The TrentonianKeane has a form of leukodystrophy, or the loss of white brain matter. Yesterday, the toddler appeared upbeat and in good spirits with his family, ...

Fundraiser helps infant fight disease  -  ‎Nov 18, 2009‎
The TrentonianI'm trying to protect him,� Joelyn O'Brien, a stay-at-home-mom, said of Keane, who suffers from leukodystrophy, which is the loss of white brain matter. ...

Good Morning, Buffalo: A quick look at what's happening today  -  ‎Nov 20, 2009‎
Buffalo NewsMany families affected by Krabbe leukodystrophy will attend as special guests. For information, call 667-1200 or visit www.huntershope.org. ...

Go “Fish for a Wishâ€? at Rubio's  -  ‎Nov 3, 2009‎
Tucson CitizenSydney was diagnosed at Tucson Medical Center with a terminal illness, metachromatic leukodystrophy at age 9. I knew her when she was an athletic, bouncy, ...

Club steps in to aid ill child  -  ‎Nov 19, 2009‎
The Times of Trenton - NJ.comKeane suffers from leukodystrophy -- a loss of white brain matter that effects the brain, spinal cord and peripheral nerves. He cannot walk or eat solid ...

Gene Therapy Technique Slows Brain Disease ALD Featured In Movie 'Lorenzo's Oil'  -  ‎Nov 5, 2009‎
Science Daily (press release)...the European Leukodystrophy Association, the Association Française contre les Myopathies, the Stop ALD Foundation and University Paris-Descartes. ...

AIDS cells as therapy  -  ‎Nov 11, 2009‎
euronewsAndres is a little boy with ALD which is a form of leukodystrophy, a rare genetic disorder which can destroy the brain. Left untreated, within around two ...

Rallying for Keane  -  ‎Nov 18, 2009‎
Irish EchoKeane, according to his dad, is stricken with "an undiagnosed Leukodystrophy," a rare and devastating illness that results from a lack of sufficient white ...

Help through heartache Heaven Scent  -  ‎Nov 16, 2009‎
Stuff.co.nzMs MacKinnon's sons, Tasman, 11, and Billy, 6, have metachromatic leukodystrophy, a degenerative condition that gradually robs them of muscle and nerve ...

Teacher aims to raise ÂŁ20k in memory of tragic Alex  -  ‎Nov 17, 2009‎
This is SomersetHe had suffered from Metachromatic Leukodystrophy, a genetic disorder that affects nerves, muscles, other organs, and behaviour. Alex's friends and family ...

2 Children With Adrenoleukodystrophy Saved Thanks To ELA Association  -  ‎Nov 6, 2009‎
RedOrbitIt affects nearly 30 % of leukodystrophy cases identified by the ELA association. Each year, 35 babies with adrenoleukodystrophy are born in France, ...

Other News To Note  -  ‎Nov 10, 2009‎
Therapeutics Daily (press release) (registration)The product already has achieved orphan status in Australia for the treatment of ALS and Krabbe leukodystrophy. Aimspro, which is derived from hyperimmune ...

Daval International Awarded Orphan Drug Designation for Motor Neurone Disease ...  -  ‎Nov 9, 2009‎
PharmiWeb.com (press release)AIMSPRO has already achieved TGA Orphan Status in Australiafor the treatment of both ALS and Krabbe Leukodystrophy (Krabbe's disease). ...

Celebrate life with a Memory Star and help life-limited children enjoy a ...  -  ‎Nov 9, 2009‎
This Is The Westcountry..."But then, very suddenly, metachromatic leukodystrophy, an extraordinarily rare genetic disease that destroys the whole of the central and peripheral ...

Metachromatic Leukodystrophy (MLD)  -  ‎Nov 11, 2009‎
DetikcomMetachromatic leukodystrophy (MLD) adalah salah satu dari kelompok gangguan genetik yang disebut leukodystrophies. Penyakit ini mengganggu pertumbuhan atau ...

Daval International recebe designação de Medicamento Ă“rfĂŁo para tratamento da ...  -  ‎Nov 8, 2009‎
YahooO AIMSPRO já obteve o Status Órfão TGA (Therapeutic Goods Administration) na Austrália para o tratamento da ELA e da Krabbe Leukodystrophy (doença de ...

Good morning, Buffalo: A quick look at what's happening today  -  15 Aug 2009
Buffalo News...in 1997 after their son, Hunter, was diagnosed with Krabbe leukodystrophy, a rare and often fatal degenerative disorder affecting the nervous system.

Illness and the Pack  -  ‎Aug 10, 2009‎
New York TimesDinah, indeed, did have globoid cell leukodystrophy, also known as Krabbe disease. There is no cure. It is fatal. Most dogs die within a year.

Special events and meetings - August 14  -  ‎Aug 13, 2009‎
Examiner.comIn addition, the family will donate a portion of the money raised towards research for a cure for MLD [Metachromatic Leukodystrophy].

Anya Potter battles rare disease to start school in Hexham  -  ‎Jul 23, 2009‎
Journal LiveBut unlike her new classmates, the brave four-year-old is battling a rare wasting disease, called leukodystrophy. She is not expected to live past her teens

Fundraiser broadens aim to helping sick children  -  ‎Aug 11, 2009‎
Weekend PostHe also met Wanita Filgate, 15, who suffers from a rare neurological disease, metachromatic leukodystrophy, and is bedridden. The terminal disease causes

Rock the Park adds to its numbers  -  ‎Jul 29, 2009‎
London Free PressThat money funds London- and UWO-based research into metachromatic leukodystrophy, a devastating progressive neurodegenerative disease that has no cure.

Sunny Days here again  -  ‎Jul 23, 2009‎
London Free PressIt helps pay for London- and UWO-based research into metachromatic leukodystrophy (MLD, a devastating progressive neurodegenerative disease.

Sport Shorts  -  ‎Jul 22, 2009‎
Tri-Town NewsReese, the daughter of a Howell firefighter, is fighting a rare condition called metachromatic leukodystrophy. MLD is a lifethreatening genetic condition in

Sport Shorts  -  ‎Jul 21, 2009‎
News TranscriptReese is the daughter of a Howell firefighter and she is fighting a rare condition called metachromatic leukodystrophy. MLD is a life-threatening genetic

John-Lee helps 'misinformed' Trans Baviaans team  -  ‎Aug 5, 2009‎
Cycling News...was born with Van der Knaap's Syndrome (a type of leukodystrophy or, in layman's terms, cysts on the brain) that is affecting her normal development.

Hunter's Hope Foundation Receives $75000 From the Wal-Mart Foundation  -  ‎Jul 29, 2009‎
PitchEngine (press release)Jim Kelly and his wife, Jill, established Hunter's Hope Foundation in 1997 after their son Hunter was diagnosed with Krabbe leukodystrophy, a rare and often

Shire plc Q2 2009 Earnings Call Transcript  -  ‎Aug 5, 2009‎
Seeking AlphaHGT-1111 is our enzyme replacement therapy for Metachromatic Leukodystrophy or MLD. It will be starting its pivotal trials Phase II/III trials in this back

Epic trek ends with updates for Lion-hearted fundraiser  -  06 Feb 2009
Australian Star,Mr Olsen’s partner, Vida Brazionis, a leukodystrophy sufferer, was the inspiration behind his charity walk. Mr Olsen dragged “Wilson�, a hastily designed

Clinical and Diagnostic Features of Delayed Hypoxic ...  -  06 Feb 2009
Journal of Neuropsychiatry (subscription)Metachromatic leukodystrophy, a neurodegenerative disease characterized by progressive central and peripheral nervous system demyelination, is the clinical

Tragically Hip To Play London Festival  -  06 Feb 2009
ChartAttack,Rock The Park VI is a fundraiser for the Bethanys Hope Foundation, a London-based organization which helps raise money for metachromatic leukodystrophy

Trek hero's final steps  -  Feb 3, 2009
Geelong Advertiser,Mr Olsen shrugged his shoulders and dedicated every step to some of the people who can't walk _ children living with leukodystrophy and cerebral palsy.

Lion walks 7000 kilometres for health project  -  Jan 29, 2009
Euroa Gazette,...walking from Numurkah, Shepparton and Murchison the days before, he had clocked up his 212th day of walking for the Leukodystrophy disease project.

Kelly calls for universal disease screening for newborns  -  Jan 15, 2009
Rochester Democrat and Chronicle,Hunter died of Krabbe leukodystrophy, an inherited neurological disease, at age 8, in 2005. Hunter's grandmother, Jacque Waggoner, CEO of Hunter's Hope,

Let's Help Grant Marshall's Wish  -  Jan 14, 2009
News@Norman,Nivens was featured in our Christmas edition – a little boy diagnosed with a disease that has a name almost bigger than he is – Adrenal Leukodystrophy.

John's 7000km walk  -  Jan 12, 2009
Forbes Advocate,This time around John’s walk is raising funds for two charities, the Lions Children’s Mobility Foundation and the Australian Leukodystrophy Support Group.

Stepping up for charity  -  Jan 11, 2009
Parkes Champion Post,LionsClubs.org.au/alcmf (The Australian Lions Children’s Mobility Foundation) or www.alds.org.au (The Australian Leukodystrophy) Support Group Inc. “So far

PROPOSED MEDICAID CUTS: Some struggle to find care  -  Jan 27, 2009
Las Vegas Review - Journal,His girls suffer from cerebral palsy and leukodystrophy -- a progressive degeneration of the white matter of the brain -- leaving them unable to stand and

Tragically Hip fits format change  -  Feb 3, 2009
London Free Press,It helps pay for London- and UWO-based research into metachromatic leukodystrophy, (MLD) a devastating progressive neurodegenerative disease.

Sigma-Tau Pharma Completes Acquisition of Chenix ...  -  Jan 30, 2009
Mass Media Distribution LLC (press release),Sigma-Tau is also working closely with the United Leukodystrophy Foundation (ULF) to better understand the needs of CTX patients and to develop a newborn

US moving to universal screening for diseases in newborns, but ...  -  Jan 28, 2009
Rochester Democrat and Chronicle,...based in Erie County — the birthplace of newborn screening in 1962 — funds treatment and research and pushed New York to test for the leukodystrophy.

Pay hikes for lawmakers stir the kettle  -  Jan 13, 2009
Weymouth News,...children who are terminally ill or have special needs, and the Foundation for Marisol’s Journey, which is devoted to finding a cure for leukodystrophy.

Giving something back  -  Jan 12, 2009
UEFA.com,As an ambassador for the European Leukodystrophy Association, the former FIFA World Player of the Year was in Monaco a few months ago to collect a cheque

PostÄ™py w neurologii dzieciÄ™cej w 2007 roku  -  Jan 19, 2009
Medycyna Praktyczna,Partial cure of established disease in an animal model of metachromatic leukodystrophy after intracerebral adeno-associated virus-mediated gene transfer.

'She smiled right until the end'  -  Dec 23, 2008
Boston Globe,So, too, was Marisol, despite spending most of her life afflicted by a form of leukodystrophy, a degenerative disorder that affects the tissue that controls

Family tribute to 16-year-old Christopher  -  Dec 29, 2008
Grantham Today,Monday, 6pm - TEENAGER Christopher Scarlett, who suffered from the rare genetic disorder metachromatic leukodystrophy, died at Grantham Hospital on

News@Norman,Seven-year-old Marshall has been in the hospital since September when he was diagnosed with Adrenal Leukodystrophy. In this season of miracles,

178 days on the road  -  Dec 15, 2008
Inverell Times,...“Only 50 families in Australia are directly affected by leukodystrophy and it receives no government funding into research.� John’s long walk has not been

Doctor says he didn't try to hasten patient death  -  Dec 11, 2008
San Francisco Chronicle,Navarro, 25, suffered from a rare degenerative disease called adrenal leukodystrophy. The San Luis Obispo man was in a coma after a heart attack when he was

Expert says doc didn't over-drug dying Cal patient  -  Dec 4, 2008
San Jose Mercury News,Navarro, 25, suffered from a rare degenerative disease called adrenal leukodystrophy. The San Luis Obispo man was in a coma after a heart attack when he was

Family in awe of dying toddler's courage  -  Dec 23, 2008
Lismore Northern Star,...suffering from a rare genetic illness called Sandhoff Disease, an aggressive form of Leukodystrophy, which makes the nervous system rapidly deteriorate.

2000 luminarias, one amazing story  -  Dec 12, 2008
Hickory Daily Record,Matthew was 15 when he died in April, a victim of the genetic disorder Metachromatic leukodystrophy. The disease, diagnosed after then-8-year-old Matthew

Patient’s mother takes the stand  -  Dec 10, 2008
San Luis Obispo Tribune,He suffered from a rare degenerative disease, adrenal leukodystrophy, which caused him pain. But when defense attorney M. Gerald Schwartzbach asked Rosa

Good deeds of others become gifts for little girl  -  Dec 3, 2008
Deseret News,Their daughter, Eliza, who will be 4 in March, was diagnosed in September 2007 with metachromatic leukodystrophy. The disease, caused by genetic defects in

ELA festive donation drive  -  Dec 16, 2008
UEFA.com,...have launched a festive campaign for donations to help the fight against leukodystrophy genetic diseases and all myelin diseases – with gifts on offer

Prenatal Testing: Worthwhile or Wrong?  -  Dec 19, 2008
Zenit News Agency,He cited the example of a disease known as Krabbe's leukodystrophy, saying it "can be successfully treated by a bone marrow transplant shortly after birth.

Ready to rock  -  23 Jul 2008
London Free Press,It has raised $680000 in four years for the foundation, which battles metachromatic leukodystrophy (MLD), a rare inherited disorder.

Friends rally for MLD victim, 13  -  23 Jul 2008
Orangeville Citizen,Kaitlin, as you might recall, is one of only a few in the world afflicted with metachromatic leukodystrophy (MLD), a genetic disorder that requires highly

8000 suggestions later, the park will rock  -  23 Jul 2008
Londoner,Like Lindey and Dave McIntyre, who lost their daughter Bethany to Leukodystrophy, Don Jones Productions, and each of you who have turned that loss into hope

TT woman’s son dies in Bermuda  -  Jul 14, 2008
Trinidad News,It took another two years and the help of the US-based United Leukodystrophy Foundation, before he was diagnosed with the little-known neurological

IrishCycling,By email to Irishcycling.com Former Irish rider Colette Swift and husband Matt are raising money in Ireland for the European Leukodystrophy Association

Kirsty's a star for a day  -  Jul 9, 2008
Devon 24,Kirsty, who is living with Leukodystrophy, loves to sing and has always wanted to record her own track. Make-A-Wish arranged for Kirsty and her family to be

Warwick student embodies 'Spirit of Success'  -  Jun 26, 2008
Times Herald-Record,Matthew has leukodystrophy and was nominated by Stephan F. Helmrich, the school’s DARE officer, because “he is so inspiring in the classroom.

Stonewall family reaches out for help with daughter's terminal illness  -  Jul 2, 2008
KSLA-TV,About a year ago Keily was diagnosed with Metachromatic Leukodystrophy, MLD for short. It's a rare disease that attacks the brain.

Sigma-Tau Pharmaceuticals Seeking FDA Approval of Medicine for ...  -  Jul 9, 2008
MarketWatchSince then, Sigma-Tau has worked closely with the United Leukodystrophy Foundation (ULF) to better understand the impact of CTX disease on patients and the

Bethanys Hope makes Sterling gesture  -  Jul 19, 2008
London Free Press,Bethanys Hope is named after the McIntyre's daughter who died in 2000, at the age of seven, from metachromatic leukodystrophy, a rare inherited disorder

Gary Windom credited as being a stabilizing influence in the ...  -  Jul 10, 2008
Press-Enterprise,Jaedyn had leukodystrophy, a genetic disease that appears early in childhood and eventually leads to loss of body tone, movements, gait, speech,

On the mechanisms of myelin formation in the central nervous system  -  Jul 10, 2008
Science Centric,In disorders such as multiple sclerosis or leukodystrophy, the formation or function of the myelin is disturbed. Previously, the molecular mechanisms of

Ten years on  -  Jul 9, 2008
Fifa.comWhether he is representing the European Leukodystrophy Association (ELA) or serving the United Nations as a Goodwill Ambassador alongside Ronaldo,

Shire Paying Jerini $519M for HAE Compound Firazyr  -  Jul 3, 2008
BioWorld Online,In the past year, the company has acquired seven products, most recently scooping up Metazym, a Phase I/II product for metachromatic leukodystrophy,

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