Ildiko Hammond is exhausted. Not only is caring for her severely disabled daughter a full-time job, it is also financially draining. But yesterday, the Lismore mother of two received some welcome news. Mrs Hammond and about 19,000 other carers of children with profound disabilities will soon qualify for a $550-a-fortnight...
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A couple have made a heartfelt appeal for help to get their terminally ill son to America for treatment. Adel and Damien Elliott from Enniskillen were left shattered by the news that both their sons Marc (4) and two-month-old Matthew have the incurable and deadly illness adrenoleukodystrophy, a rare genetic...
Durham, NC – Karen Kump of Elko, Nevada, knew the lump on her right breast should be checked by a doctor when she first noticed it in July 2022. “But my granddaughter was getting married, and I wanted the attention to be on her,” she said. Kump, 78, didn’t know...
The grandparents of a four-year-old Enniskillen boy diagnosed with a rare terminal illness are appealing for public support to help them raise money towards his dietary needs, treatment, hospital trips, and even a possible cure. Marc Elliott is the son of Damien and Adel and brother to six-week-old Matthew. They...
MILFORD — Amanda Pitre, 30, lives with her parents and can only work part-time because she has an autoimmune disease that creates constant, burning pain as if a “blowtorch” was lit inside her. But Pitre, 30, who was born weighing only 2 pounds, 2 ounces, has begun forging a path to...
New York, NY — The Hereditary Neuropathy Foundation (HNF) announced today the formation of a Research Consortium (HNF-RC) designed to speed the development of new therapies for Charcot-Marie-Tooth disease (CMT), which affects approximately 1 million US citizens, and is the most common inherited neuromuscular disorder worldwide. The HNF has made...
St. Paul MN – Some of the things seven-year-old Holli loves about school are getting candy on her birthday, math (she could do math all day!), and playing on the swings during recess. Her specialized paraprofessional, Mr. Tyler, joins her in swinging and in hallway banter as they navigate Holli’s...
WASHINGTON — The Global Fund to Fight AIDS, Tuberculosis, and Malaria is currently facing a major financing shortfall. While the Foreign Operations subcommittee provided a welcome increase over the President’s request, today’s markup suggests that the U.S. is going to fall far short of its commitment to fund fully its...
San Francisco, CA – For Paul Bresge, getting into biotech wasn’t fulfilling a career goal. It was fulfilling a promise. One of his daughters, Tamar, was diagnosed with retinitis pigmentosa in 2010 at the age of 15, when the family was living in Toronto. “We were basically told—in the whole...
Our family started quarantining almost a year ago this week. Our daughter Grace has a compromised immune system due to Lambert-Eaton myasthenic syndrome, which made us especially careful and protective of her health and well-being. For the first four months of quarantine, we embraced family time wholeheartedly. Our son was...