There are two opportunities next week for local residents to help a young six-year-old Bayport girl battling an extremely rare disease and help fund research for a cure.
Marisa Carney was diagnosed in June of 20120 with ROHHAD, which stands for Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation.
The disease has no cure or treatment and the source is still unknown. Symptoms vary from child to child and often times the disease is misdiagnosed. The initial symptom is typically is a rapid onset of obesity in the first two to four years of life, impairment to the nervous system and inevitably reduced lung function that then requires the use of a ventilator.
Marisa, a student at Sylvan Avenue Elementary, is the local spokesgirl for ROHHAD Fight Inc., a non-profit organization focused on raising awareness and funding to ease the financial burden for families with children suffering from ROHHAD.Let Patch save you time. Get great local stories just like this delivered right to your inbox or smartphone everyday with our free newsletter. Fast signup here.
A golf tournament, called The Drives to Fight ROHHAD Golf Classic, will be held at West Sayville Golf Course this upcoming Monday, and sponsors and donations are welcome.
The event kicks off at the driving range at 10 a.m. with a shotgun 12:30 course start. The event also includes a putting contest and reception and awards banquet. Those interested in donating or participating can call 567-1704.
On Tuesday the newly-opened Sweet Frog frozen yogurt store, on Sunrise Highway in Sayville in the 7-Eleven shopping center, will donate 10 percent of all sales, from open to close, to the ROHHAD Fight effort.
Kids can also get their photo taken with Cookie and Scoop, Sweet Frog mascots between 7 p.m. and 9 p.m.