In late May this year, Dr. Stephane Huberty inserted a needle into his upper arm and injected himself with a cloudy white vaccine previously tested only on rats and dogsThe reason for this desperate measure: Dr. Huberty suffers from myasthenia gravis, a rare neurological condition. It is one of mo

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Barb Sherman will take particular pleasure in this year's Walk, Run or Roll for GBS/CIDP on September 11 in Woodstock's Roth Park"It's like a miracle mile, that's what we think of it," the LaSalette resident saidSherman is no couch potato, but that's what she found herself bound to 10 years ago,

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Before Tommy Waddell even came into the world his mum knew there was something wrongDoctors told Natalie Waddell and husband Gordon their son had the rare genetic disorder 1P36 Deletion Syndrome, caused by the loss of a segment of DNA from the gene-rich chromosome 1“I had a bad feeling duri

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A courageous teenager battling a life-threatening condition has been hailed an inspiration after enduring dozens of blood transfusions during 18 months of treatmentChristie Dalgliesh, 14, now hopes to one day become a nurse after being so impressed by the work of the NHS since being told she had a

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Bone marrow from a matched Aboriginal Canadian donor may be the best chance Harold and Lindsey Bost's daughter, Leona, has for survivalThe five-month-old was born with Cartilage-Hair Hypoplasia (CHH). CHH is a rare genetic disorder characterised by short stature, fine, sparse hair, and immunodefic

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Despite having a rare condition called Oculocutaneous Albinism, two-year-old Lulu Chard is mastering more than mostAlbinism is a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of an enzyme involved in the producti

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Halfway through her first full marathon last January, Laurie Paschal admits she was exhausted as she struggled in the 21-degree conditions at Disney World“I’m from Texas, and I wasn’t prepared for the cold,” Paschal said. “There were numerous occasions where I didn&rs

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From the first familiar sign of stiffness, Leland Smith knows what's comingAn arm or a leg becomes stiff, then numb. Then it swells. Blood flows into Leland's joints, and the terrible pain beginsThis kind of internal bleeding is an almost-daily occurrence for 17-year-old Leland, who has a rare an

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When Chuck and Amy Schulze moved into their Fairfield Township home 10 years ago, they never dreamed it would one day be dangerous for their familyThey never imagined that Amy and two of their three children - 12-year-old Elizabeth and 7-year-old Erica - would be diagnosed with a rare hereditary d

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CAROLLWOOD, Fla. -- A Carrollwood mother is fighting to save her two sons from a rare and fatal disease by fighting for votes in Pepsi's Refresh Project competition to fund research for Giant Axonal NeuropathyLike any other mother, Mary Pizzurro takes care of her boys. The difference is, her sons

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