General
Community Gathers To Help Boy With Rare Disease
Story Category:
General By Jackie Shutack
ALLENTOWN, Pa. -- Hundreds turned out Sunday to help an Emmaus family find a cure for their young son's disease.
3-year-old Joshua Scoble poses for pictures at a fundraiser held in his honor at the Allentown Fairgrounds.
JUSTIN O'NEILL/JOSHUA'S COUSIN: "He really wants to be a kid. Thank God he doesn't know what he has right now."
What he has is a rare genetic disorder that he shares with approximately 700 people worldwide.
STACY SCOBLE/JOSHUA'S MOTHER: "He has a condition called Fibrodysplasia Ossificans Progressiva, short for FOP."
Rare Disease of Interest:
All Diseases
Kentuckiana family finds strength as sons battle rare, terminal disease
Story Category:
General This is a story about the strength of one Kentuckiana family and their search for a medical breakthrough.
Thomas Milburn and Stacy Webb live in Jeffersonville.
Last year their lives were turned upside down when they discovered both of their seemingly healthy sons had a rare, terminal disease.
3-year-old Thomas has a smile that can light up a room, especially when his dad sings a favorite lullaby. But his family isn't sure how much longer this smile will last.
Rare Disease of Interest:
All Diseases
Young Michigan woman named outstanding 'thon' fundraiser of the year
Story Category:
General Jennifer Bechard is a true hero in every since of the word. Having gone through more than 80 brain surgeries by the age of 22 to treat hydrocephalus, a chronic neurological condition which creates an abnormal buildup of cerebral spinal fluid in the brain, Bechard has channeled this incredible personal struggle into a movement against the disease.
Indeed, whether designing fundraising websites from her hospital bed to hitting the streets of her hometown Northville, Mich., to lead Hydrocephalus WALKs, Bechard is the Hydrocephalus Association's most avid and active supporter.
Rare Disease of Interest:
All Diseases
Courtney Taylor won't let MS slow him down
Story Category:
General By Kevin Scarbinsky -- The Birmingham News
Like a lot football players, Courtney Taylor is waiting for the phone to ring because, at the moment, he’s a man without a team.
Auburn’s all-time leading receiver was one of the last players cut by the Seattle Seahawks on the eve of the 2009 season, and he didn’t catch on with any other organization during the season.
He’s heard some good things lately. The Philadelphia Eagles might work him out, and the Cleveland Browns, too. Mike Holmgren, who picked him at Seattle in the sixth round of the 2007 NFL Draft, is now the Cleveland president.
Rare Disease of Interest:
All Diseases
Multiple Sclerosis
Ashley's gift: A liver for LuLu
Story Category:
General By Heather May
The Salt Lake Tribune
Organ donation » Two mothers and their daughters are forever linked by a 'wonderful, yet horrible' donation.
"A lot of my emotions are tied up in thinking about that family and praying for that family. It's amazing in someone's darkest hour they can say, 'Take what you can from this person that we love and give life to [up to] eight other people.'" -- Liz Badger
Murray » Liz Badger is scouring every cupboard and drawer, tossing enough kitchen containers, blankets and clothes to fill at least a dozen bags for charity.
Rare Disease of Interest:
All Diseases
Alpha1-Antitrypsin Deficiency
