ROHHAD FIGHT, Inc. Flash Mob (Watch Me Whip Nae Nae)
Jennifer Osipoff, M.D., FAAP Assistant Professor Pediatric Endocrinology and Debra E. Weese-Mayer, M.D.Cummings-Mayer Professor of Pediatric Autonomic Medicine, present Marisa's story with Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation (ROHHAD)
The nonprofit organization founded for a Bayport girl with a rare obesity disorder will receive its largest single donation Wednesday -- more than $100,000 -- from Atlantic Auto Group.
ROHHAD Fight Inc., started by the family and friends of Marisa Carney to promote awareness and fund research into the disorder, will be presented with a check at Atlantic Auto Mall in West Islip at 4 p.m.
Thank you NY Auto Giant for your support!
State lawmakers passed a resolution declaring May 2013 ROHHAD Awareness month, honoring 7-year-old Long Island girl diagnosed with the rare obesity disorder.
Assemblymen Andrew Garbarino (R-Sayville) and Al Graf (R-Holbrook) presented a copy of the resolution to Marisa Carney of Bayport on the floor of the state Assembly.
"This is something small I can do right now", said Garbarino, who as a political candidate met her mother last summer at a Bayport library reading event. "Maybe someday it will be one of those rare diseases that will be tested at birth. At least this is a way I can help them bring awareness. You got to start somewhere."
Ten little girls in pale-blue leotards and tulle skirts line up by the balance bar, waiting for ballet class to begin.
Some fidget with their soft pink slippers. Others dance with their reflection in the wall-length mirror.
Marisa Carney stands still at the end of the line, her round face a mask of concentration.
Marisa Carney loves to dance, and Gloria Gaynor wanted to provide the ballad and the beat.
The Grammy-winning singer performed her disco-era hit "I Will Survive" in a tribute to the Bayport girl Friday night at the NYCB Theatre at Westbury.
The story of Marisa and her battle with ROHHAD.