Krabbe Disease

Type: Keyphrase
Name: Krabbe Disease
First reported Jul 31 2014 - Updated Jul 31 2014 - 1 reports

New Sharon Toddler Defying Odds To Reach Her 3rd Birthday

We all reach milestones in life. But few of us will ever reach one that compares to the one little Addilyn Davis will hit this weekend.We first met Addilyn back in February of last year. At six months old, she was diagnosed with Krabbe disease, a rare ... [Published WABI TV - Jul 31 2014]
First reported Jul 29 2014 - Updated Jul 30 2014 - 1 reports

Fate Therapeutics Announces FDA Clearance of IND for Clinical Development of PROHEMA in Inherited Metabolic Disorders

(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 the U.S. Food and Drug Administration (FDA) ... [Published Crawford Financial Planning - Jul 29 2014]
First reported Jul 26 2014 - Updated Jul 26 2014 - 1 reports

Bristol Township boy helps raise money for Hope for Hannah

Budding fundraiser Ryan Norris brought his bike to Harry S. Truman High School on Saturday, but first, he had to prepare it.This involved glittery tinsel with stars, a lot of crepe paper, and his mother, Tammy. “My mom did the sign, and I did pretty much ... [Published The Intelligencer - Jul 26 2014]
First reported Jul 26 2014 - Updated Jul 26 2014 - 1 reports

Families release balloons over Ellicottville

ELLICOTTVILLE, N.Y. (WIVB) – Dozens of families touched by leukodystrophy released balloons over Ellicottville on Friday.Holiday Valley hosted a 16th annual symposium put on by the Hunter’s Hope Foundation. Jim and Jill Kelly, whose son Hunter lived with ... [Published WIVB - Jul 26 2014]
First reported Jul 22 2014 - Updated Jul 22 2014 - 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 - Jul 22 2014]
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

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]

Quotes

...transformative therapeutic intervention," commented Christian Weyer, M D , M A S , President and Chief Executive Officer of Fate Therapeutics. "We believe pharmacologically-optimized HSC therapeutics, such as PROHEMA, hold significant promise for improving outcomes in patients with inherited metabolic and other rare genetic disorders. FDA clearance of the PROVIDE study marks an important step towards our goal of clinically evaluating this novel treatment paradigm in the non-malignant disease setting."
"Watching him develop and grow and do things that at one point I thought he'd never do, was incredible to watch" 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."

More Content

All (16) | News (15) | Reports (0) | Blogs (1) | Audio/Video (0) | Fact Sheets (0) | Press Releases (0)
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New Sharon Toddler Defying Odds To Reach Her 3r... [Published WABI TV - Jul 31 2014]
Fate Therapeutics Announces FDA Clearance of IN... [Published Crawford Financial Planning - Jul 29 2014]
Bristol Township boy helps raise money for Hope... [Published The Intelligencer - Jul 26 2014]
Families release balloons over Ellicottville [Published WIVB - Jul 26 2014]
Toddler still a ‘giggly’ girl, despite genetic ... [Published Findlay Courier - Jul 22 2014]
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]
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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