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...
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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...
I consider watching our daughter struggle through the symptoms of Lambert-Eaton myasthenic syndrome (LEMS) one of the most difficult aspects of my life. As I look back on the last two and a half years since Grace began showing symptoms, I realize how I haphazardly stumbled through the five stages of...
ARLINGTON, Va. — The ALS Association proudly announces the largest single gift in its history from the estate of the late philanthropist Hugh Hoffman. The $58 million gift will profoundly impact the lives of people living with ALS and their loved ones, advancing the ALS Association’s goal of making amyotrophic...