SAINT JOHN – With a pile of wet suds and some dirty cars, a collision repair shop hopes to set a Guinness World Record and help find a cure for cystic fibrosis. King CarStar Collision, on Rothesay Avenue, will join 80 other franchise locations in a national car wash Saturday...
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A golf tournament and banquet Saturday will memorialize a former University of Oklahoma student and benefit a scholarship named in his honor. Events in A Servant’s Heart Weekend are in memory of William “Billy” Khourie II. The 22-year-old died Jan. 6 from a head injury he sustained while snowboarding in...
The Sabo family of Rutherford will host its third-annual Fragile X benefit at Yogi Berra Stadium in Montclair Thursday, June 25. The benefit will begin with a barbecue at 6 p.m. Then at 7:05 p.m., the New Jersey Jackals will take on the Worcester Tornadoes. Tickets for the baseball game...
A fundraiser will be held Thursday for Zachary Ghazali, a 17-year-old LaSalle boy who travels to China for medical treatment of a rare and terminal genetic disorder that attacks the immune system. Ghazali suffers from the incurable Friedreich’s ataxia, which progressively sabotages the co-ordination of the arms and legs, diminishes...
Gabbie Strauss will slowly die from the inside out if a cure for an extremely rare disease can’t be found. The 19-month-old infant may look the picture of perfect health, but sadly that’s not the case. Gabbie is suffering from cystinosis, an incurable metabolic disease where the amino acid cystine...
DUBLIN – For Graves’ Disease Awareness Month in July, Horizon Therapeutics plc (Nasdaq: HZNP) is teaming up with world-renowned track star and three-time Olympic gold medalist Gail Devers, who has been living with Graves’ disease and symptoms of Thyroid Eye Disease (TED) for more than 30 years. Horizon and Devers...
In an effort to raise funds to pay for a lung transplant needed by Lodi resident Alicia Brogle, the Brogle family will hold a yard sale Friday through Sunday at 729 Westwood Ave. in Lodi. Brogle, 32, lives with cystic fibrosis and needs to use an oxygen machine to breath...
New Haven, CT – Gaucher disease treatment has come a long way in the past three decades. The United States Food and Drug Administration (FDA) approved the first enzyme replacement therapy (ERT) in 1991. That first approval opened the door for other ERT treatments and paved the road for substrate...
As per the Organization of Rare diseases in India (ORDI), 1 in 20 Indians is affected by a rare disorder. More than 7,000 rare diseases are known and reported worldwide; from these approximately 80 per cent are known to have a genetic predisposition. Some of these “common” rare diseases we’ve...
The family of a four-year-old girl with a rare genetic disorder are looking for auction and raffle prizes to help give something back to two charities that have helped her. Bethany Hepburn, of Washwood Close, Little Hulton, has Wolf Hirschhorn Syndrome, which severely restricts her development and has caused a...