Krabbe Disease

Type: Keyphrase
Name: Krabbe Disease
First reported 18 hours ago - Updated 18 hours ago - 1 reports

Toddler still a ‘giggly’ girl, despite genetic illness

EMMA NICKERSON, 2, is undergoing treatment for globoid cell leukodystrophy, or Krabbe disease, at Children’s Hospital of Pittsburgh. Friends and family of Emma and her parents, Sarah and Jay Nickerson, of Carey, will hold a hog roast fundraiser Saturday ... [Published Findlay Courier - 18 hours ago]
First reported Jul 17 2014 - Updated Jul 17 2014 - 1 reports

Hall of Fame QB Jim Kelly stoic in cancer battle

Jim Kelly’s spirited battle with cancer isn’t over, but the Hall of Fame quarterback says he has no fear if the disease ends up getting the best of him.The former Bills star, whose fight continues to inspire his adopted hometown of Buffalo, insisted this ... [Published New York Post - Jul 17 2014]
First reported Jul 16 2014 - Updated Jul 16 2014 - 1 reports

An Approach to Diagnosing Adult Onset Leukodystrophies

Renaud DL. Clinical approach to leukoencephalopathies. Semin Neurol 2012;32:29–33.Costello DJ, Eichler AF, Eichler FS. Leukodystrophies: classification, diagnosis and treatment. Neurologist 2009;15:319–28.Maria BL, Deidrick KM, Moser H, et al . Leukodystrophies: ... [Published General Medicine eJournal - Jul 16 2014]
First reported Jul 09 2014 - Updated Jul 09 2014 - 1 reports

6-Year-Old Plans Hope for Hannah Bike Parade Fundraiser

Ryan Norris is a little man with a big idea.The 6-year-old, who attends Mary Devine Elementary School, is planning a bike parade to raise money for a local child diagnosed with a rare disease.The bike parade for Hope for Hannah will be held from 11 a.m. ... [Published Bensalem Patch - Jul 09 2014]
First reported Jul 08 2014 - Updated Jul 08 2014 - 1 reports

Softball tournament to support Hope for Hannah

Twnety-eight teams will compete in a softball tournament July 19 to raise money for Hope for Hannah, an organization created to help pay the medical expenses of Hannah Ginion, a 17-month-old who was diagnosed with Krabbe disease.The tournament will start ... [Published Bucks County Courier Times - Jul 08 2014]
First reported Jul 05 2014 - Updated Jul 05 2014 - 1 reports

John's Miracle: Treatable Disorder Mimics Cerebral Palsy and Autism>

FRESNO, Calif. (KFSN) --Nearly every baby born in the U.S. blood collected within a couple days of birth to screen for dozens of genetic disorders, but some disorders have slipped through the cracks and aren't tested for. There is an easily treatable ... [Published ABC30 - Jul 05 2014]
First reported Jun 30 2014 - Updated Jun 30 2014 - 1 reports

Fate Therapeutics Submits IND Application for the Clinical Development of PROHEMA(R) in Inherited Metabolic Disorders

SAN DIEGO, June 30, 2014 (GLOBE NEWSWIRE) -- Fate Therapeutics, Inc. ( Nasdaq:FATE ), a biopharmaceutical company engaged in the discovery and development of adult stem cell modulators to treat orphan diseases, announced today that it has submitted an ... [Published CW Atlanta - Jun 30 2014]
First reported Jun 30 2014 - Updated Jun 30 2014 - 1 reports

A one in 100,000 chance...

NINE-month-old High Wycombe boy Levi Wibberley is a statistical anomaly.A one in 100,000 chance led to Levi being diagnosed with Krabbe disease – the unforeseen result of both parents having the same rare genetic mutation.Now his parents need the numbers ... [Published InMyCommunity - Jun 30 2014]
First reported Jun 25 2014 - Updated Jun 25 2014 - 1 reports

House renews newborn screening law pushed by Jim Kelly

WASHINGTON – The House of Representatives on Tuesday voted to renew legislation that helps states to expand their newborn health screening programs – a measure first made law six years ago after a push from retired Buffalo Bills great Jim Kelly and his ... [Published Buffalo News - Jun 25 2014]
First reported Jun 18 2014 - Updated Jun 18 2014 - 1 reports

Italian Claims Miracle Stem Cell Cures – Scientific Community Skeptical

Shades of Burzynski: Davide Vannoni’s Stamina Foundation is under fire from scientists for claiming to have accomplished all manner of medical miracles. Vannoni claims that he’s the victim of a conspiracy by big pharma to silence him. Vannoni is a psychologist, ... [Published Disinformation - Jun 18 2014]
First reported Jun 16 2014 - Updated Jun 16 2014 - 1 reports

Meet the con man selling fake stem cell treatments to children

A three-year-old Italian boy who suffers from a rare and incurable degenerative disorder called Krabbe disease received a stem cell injection last Saturday. It was his sixth dose, and according to the person who developed the treatment, Davide Vannoni, ... [Published The Verge - Jun 16 2014]
First reported Mar 14 2014 - Updated Mar 15 2014 - 1 reports

Hall of Fame QB Jim Kelly’s Cancer Returns

(BUFFALO, N.Y.) — Hall of Fame quarterback Jim Kelly’s cancer has returned. The Erie County Medical Center in Buffalo said Friday that cancer was found when the former Buffalo Bills star came in for follow-up testing after having oral surgery to remove ... [Published TIME.com - Mar 14 2014]

Quotes

"It kind of took our world and flipped it upside down" Melissa said
...HSC therapeutics in rare genetic disorders," said Christian Weyer, M D , M A S , President and Chief Executive Officer of Fate Therapeutics.  "Submission of this IND application to support the clinical evaluation of PROHEMA in inherited metabolic disorders reflects our commitment to improving patient outcomes across a broad spectrum of malignant and non-malignant conditions."
..."When they were in the basement, they were being investigated by the police," Cattaneo says. "But when they started doing their stuff in a public hospital, any citizen would think it was a good thing." And because the treatments were given in the hospital, Italy's national health services was footing the bill

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All (14) | News (13) | Reports (0) | Blogs (1) | Audio/Video (0) | Fact Sheets (0) | Press Releases (0)
sort by: Date | Relevance
Toddler still a ‘giggly’ girl, despite genetic ... [Published Findlay Courier - 18 hours ago]
Hall of Fame QB Jim Kelly stoic in cancer battle [Published New York Post - Jul 17 2014]
An Approach to Diagnosing Adult Onset Leukodyst... [Published General Medicine eJournal - Jul 16 2014]
6-Year-Old Plans Hope for Hannah Bike Parade Fu... [Published Bensalem Patch - Jul 09 2014]
Softball tournament to support Hope for Hannah [Published Bucks County Courier Times - Jul 08 2014]
John's Miracle: Treatable Disorder Mimics Cereb... [Published ABC30 - Jul 05 2014]
A one in 100,000 chance... [Published InMyCommunity - Jun 30 2014]
Fate Therapeutics Submits IND Application for t... [Published CW Atlanta - Jun 30 2014]
House renews newborn screening law pushed by Ji... [Published Buffalo News - Jun 25 2014]
Italian Claims Miracle Stem Cell Cures – Scient... [Published Disinformation - Jun 18 2014]
Meet the con man selling fake stem cell treatme... [Published The Verge - Jun 16 2014]
Hall of Fame QB Jim Kelly’s Cancer Returns [Published TIME.com - Mar 14 2014]
Methods and compositions for targeting agents i... [Published PharmCast - Jan 05 2014]
Hall of Famer Jim Kelly urges Pa. to expand Han... [Published Beaver County Times - Oct 22 2013]
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Hall of Fame QB Jim Kelly’s Cancer Returns [Published TIME.com - Mar 14 2014]
(BUFFALO, N.Y.) — Hall of Fame quarterback Jim Kelly’s cancer has returned. The Erie County Medical Center in Buffalo said Friday that cancer was found when the former Buffalo Bills star came in for follow-up testing after having oral surgery to remove ...
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