Waggoner Added to Task Force Sep 6, 2008
Hunter's Hope was established in 1997 by pro football hall of fame member and former Buffalo Bills quarterback, Jim Kelly, and his wife, after their son was diagnosed with Krabbe disease. The task force includes parents who will be part of planning for future projects. (R News)
Makinleys family headed to New York Jul 8, 2008
The Mills lost their daughter, Makinley, to a degenerative neurological disorder called Krabbe disease ... The symposium is for families that have had children with Krabbe disease. (Mason City Globe-Gazette, IO)
UR Stem Cell Work Improves Odds for Kids Jun 5, 2008
The research could lead to treatment and possibly a cure for pediatric diseases such as Krabbe disease, the one that claimed the life of former Buffalo Bill Jim Kelly's son, Hunter in 2005. "In experimental models now, at least we know there is the potential for cure," said Steven Goldman, a neurologist at the U of R Medical Center. (R News)
New Hope For Deadly Childhood Disease Dec 15, 2007
Some of these lysosomal-storage diseases, as they're called, include Krabbe disease (to which Buffalo Bills quarterback Jim Kelly lost his son, Hunter, in 2005), Tay-Sachs and metchromatic leukodystrophy. "Our research might indeed open doors for learning how other neurological disorders might benefit from drugs that regulate AMPA receptors," Pearce said. (Science Daily)
Umbilical cord blood can save babies Dec 13, 2007
One metabolic disease Prasads team treated is Krabbe disease, also known as Krabbe leukodystrophy, which affects the nervous system. Another is Hurler disease, which affects the heart, liver and brain. (India Times, India -- Health/Science)
Cord Blood Viable Option For Kids With Life-threatening Metabolic Disorders Dec 12, 2007
The study was funded by the National Institutes of Health and Hunter's Hope Foundation, an organization founded in memory of former NFL quarterback Jim Kelly's son Hunter, who died from Krabbe disease, an inherited metabolic disorder that affects the nervous system. "These disorders are rare when taken individually -- some of them occur in only one in a million births -- but if you put them together they have a sizeable incidence, maybe 1 in 10,000 births," Prasad said. (Science Daily)
Benefit Saturday for Makinley Mills Aug 15, 2007
Makinley, 11 months, daughter of Jeremy and Dawn Mills of Garner, has been diagnosed with Krabbe disease, a terminal degenerative neurological disorder. No cure is available. (Forest City Summit, IO)
Illness draws family closer Aug 15, 2007
Finally, a neurological pediatrician from Mayo gave them the news: Makinley suffered from Krabbe disease, a rare inherited degenerative disorder of the nervous system ... About Krabbe disease ... Krabbe disease is caused by a deficiency of an essential enzyme for myelin metabolism. (Forest City Summit, IO)
Disease draws family together Aug 13, 2007
Finally, a neurological pediatrician from Mayo gave them the news: Makinley suffers from Krabbe disease, a rare inherited degenerative disorder of the nervous system ... Makinley, 11 months, daughter of Jeremy and Dawn Mills of Garner, has been diagnosed with Krabbe disease, a terminal degenerative neurological disorder ... About Krabbe disease. (Mason City Globe-Gazette, IO)
Doctor promotes blood tests for babies Apr 27, 2007
Babies are screened for HIV, sickle-cell disease, cystic fibrosis and the most recent addition to the battery, Krabbe disease. Early identification is crucial, said Dr. Michele Caggana, director of the state's newborn screening program. (Albany Times Union)
Cord Blood And Disease Treatment Apr 26, 2007
List Of Diseases Now Treated With Umbilical Cord Blood Stem Cells. Umbilical cord blood is easy to harvest. (Suite101.com)
Built Just For A Boy Apr 1, 2007
No one knows how long Ryan has to enjoy his new room, donated to him by 65 local contractors after they heard about the boy and his little sister, Alyssa, 2, who have the same congenital illness, Krabbe disease ... He learned that Krabbe disease will kill Ryan, who has already surpassed his life expectancy, and although the prognosis for Alyssa is better, she is dependent on a respirator ... Ryan, who was born on March 7, 2001, was diagnosed with Krabbe disease when he was 7 months old. (FOX61, CT)
Never Say Never Mar 16, 2007
Friday, March 16, 2007 Last Update: 07:00 PM EST. IT'S NOT A NOVEL FOR YOUR MANTLE. (New York Post -- Gossip)
Fundraiser attracts talent Jan 26, 2007
Kelly's only son, Hunter, was born with Krabbe disease, a disorder of the nervous system, and died in 2005 at the age of 8. After Hunter was born in 1997, Kelly and his wife, Jill, established Hunter's Hope, a foundation to raise public awareness and help advance treatments for Krabbe disease and similar disorders. (Fresno Bee -- Local)
Combo Therapy Offers Hope for Krabbe's Disease Jan 17, 2007
MONDAY, Jan. 15 (HealthDay News) -- By using a combination of bone marrow transplants and gene therapy, U.S. researchers were able to greatly extend the lives of mice with a fatal neurodegenerative disease that's similar to Krabbe disease in humans. Krabbe disease, also called globoid-cell leukodystrophy, is an inherited disorder that eventually destroys the brain and nerves of the body ... The results of this study by researchers at the Washington University School of Medicine in St. Louis... (MEDLINEplus)
NIH launches 'Health Info Rx Program' on newborn screening and related genetic disorders Nov 21, 2006
Micki Gartzke, a patient advocate from Shorewood, Wisconsin, lost her 13-month-old daughter, LeA Marie, to a rare genetic disorder, Krabbe disease, in 1987. "As a parent, of course you want every possible piece of information when you find out your child is sick. The Internet back then was in its infancy --resources were scattered and I did a lot of hunting and pecking to find things that would help us. It's so gratifying to see a resource like Genetics Home Reference, which has collected and... (EurekAlert! -- Business News)
New moms may donate umbilical-cord blood Nov 14, 2006
She has been successful, for example, in using the treatment on patients with rare, inherited metabolic disorders, including Hurler syndrome and Krabbe disease. In time, she thinks the blood could be a source of rejuvenation for organs and tissues that are damaged by common problems such as heart disease or strokes. (Orlando Sentinel)
Clintons have a blast watching Bills at stadium Oct 3, 2006
Clinton announced $500,000 in federal funding she secured for the Hunter's Hope Foundation, named for the Kellys' 8-year-old son, who died last year of Krabbe disease ... introduced to help states increase the screening of newborns for disorders like Krabbe disease, to facilitate earlier diagnosis and treatment. (Buffalo News)
Jim Kelly & Sen. Clinton Team Up Oct 2, 2006
Kelly's son, Hunter, died last year from Krabbe disease. New York was the first state to test for Krabbe, but that test was not available when his son was born in 1997. (R News)
Sen. Clinton, Ex-QB Jim Kelly Team on Newborn Screening Oct 2, 2006
"To me, it doesn't matter if they're Democrat or Republican when it comes to children," said Kelly, whose son Hunter died last year from Krabbe disease ... Kelly said New York was the first state to test for Krabbe disease, but the test wasn't available when his son was born in 1997. (Newsmax)
Testing reveals a rare killer Aug 1, 2006
One such condition is Krabbe disease, a fatal enzyme disorder that affects 1 in 100,000 children, which is best known for killing Hunter Kelly, the son of former Buffalo Bills quarterback Jim Kelly. Next week, Wadsworth will become the first health agency in the world to begin testing for Krabbe, for which a brand-new treatment offers promise. (Albany Times Union)
Family Inspires Acts Of Giving Jul 31, 2006
Krabbe disease will kill Ryan, who already has surpassed his life expectancy ... By October 2001, he was diagnosed with Krabbe disease ... Krabbe disease, they would learn, is a rare inherited degenerative disorder of the central and peripheral nervous systems that breaks down the nerves' protective myelin coating, causing severe impairment to mental and motor skills. (FOX61, CT)
Hunter's Hope Comes to Rochester Jul 29, 2006
Hunter died last year following a lifelong struggle with Krabbe disease. Jim Kelly says the people in the Rochester area have been very supportive. (R News)
Military Families Face Tough Choices Jul 28, 2006
"We have bad days, but we try not to have those too often," she said by telephone from Durham, N.C., where her daughter, Ashleigh, is being treated for Krabbe disease ... was in Durham, N.C., taking care of his son Noah, who eventually died from Krabbe disease. (Forbes -- Technology)
Mom deals with husband in Iraq and sick daughter in N.C. Jun 19, 2006
Michelle Gwin spends almost every waking minute taking care of her young daughter, Ashleigh, who was stricken with a debilitating illness called Krabbe disease that left her 3-year-old needing near-constant medical attention. One of the few consolations may be that the time and energy spent on her daughter keeps her mind off something else that can be just as worrying: her husband, Howard, serving in Iraq. (Herald Sun)
Hope goes on Feb 16, 2006
Hunter James Kelly, who shared a Valentine's Day birthday with his father, died Aug. 5 of Krabbe disease, a rare degenerative condition that destroys the brain's white matter. Hunter's Hope Foundation, established by the Kellys after Hunter was diagnosed in 1997, has raised public awareness, as well as millions of dollars for research, into Krabbe and other leukodystrophies. (Buffalo News)
Pataki to propose Hunter Kelly center Jan 18, 2006
Associated Press Jill and Jim Kelly's son, Hunter James, who suffered from Krabbe disease, died last August ... Hunter suffered from Krabbe disease, a rare degenerative genetic disease, a form of leukodystrophy that disintegrates the white matter of the brain. (Buffalo News)
New UW Study Offers Strategy For Treatment Of Fatal Nervous System Disorder Jan 11, 2006
(May 27, 2005) -- Children with a fatal genetic disorder called Krabbe disease can be saved and their brain development preserved if they receive stem cells from umbilical cord blood before symptoms of the disease. . (Science Daily)
Some prominent Western New Yorkers who died in 2005 Jan 2, 2006
Son of Buffalo Bills quarterback Jim Kelly raised public awareness and millions of dollars for research into Krabbe Disease. Aug. 5. (Buffalo News)
