Rare Disease Report

Conan to Host Rare Disease Fundraiser

SEPTEMBER 22, 2017
Congenital Hyperinsulinism International (CHI) will hold its annual Sugar Soirée on Sunday, November 19, 2017 at THE POOL and THE GRILL restaurants (described by Bloomberg as “New York’s most important new restaurant”) in the Seagram Building.

CHI is a 501(c) 3 patient advocacy group focused on helping those born with congenital hyperinsulinism (HI) and their families.

Late-night talk show host Conan O’Brien will bring his comedic charm to the Sugar Soirée as the night’s official host. The Emmy award-winning comedian, writer, and producer is personally acquainted with a patient who has HI and is an advocate for better treatment options and hope for a cure.

HI, a rare congenital disorder that occurs in approximately 1 of every 25,000-50,000 births. Babies born with the condition have extremely high levels of insulin that leads to severe hypoglycemia, which can cause seizures and coma, brain damage, and even, death, if not detected and treated in a timely manner.  For more information on the signs and symptoms of hypoglycemia, please visit: congenitalhi.org/hypoglycemia-guidelines/

In addition to the comedic stylings of O’Brien, the evening will recognize and honor several clinicians and advocates that have changed the lives of people living with HI.
Diva De León-Crutchlow, M.D., Director of the Congenital Hyperinsulinism Center at the Children’s Hospital of Philadelphia, will receive the CHI Be My Sugar Award for Medical Excellence at the Soirée. Dr. De León-Crutchlow is at the forefront of HI clinical care and research.

Paul Thornton, M.D,  Medical Director and Endowed Chair of the Cook Children’s Hyperinsulinism Center in Fort Worth, TX, and recipient of last year’s CHI Be My Sugar Award for Medical Excellence, will also be recognized. Dr. Thornton is the lead author of the notable Hypoglycemia Guidelines for Infants and Children, published in the Journal of Pediatrics. These guidelines set a new and important standard for recognizing hypoglycemia before adverse consequences occur.

Alex Fallon will receive the CHI Be My Sugar Extraordinary Volunteer Award. Ms. Fallon is an award-winning advertising art director and graphic designer who has shared her graphic design talent with CHI and has spent countless hours volunteering her time.

Funds raised at the Sugar Soirée will support CHI’s efforts to:

  • Raise vital awareness of the condition to prevent prolonged hypoglycemia that can lead to brain damage and death
  • Advance new research with the development of the HI Global Registry and funding for novel research
  • Help patients gain access to specialized treatment, medications, supplies, and excellent care
For more information or questions please contact CHI’s Executive Director Julie Raskin via email jraskin@congenitalhi.org or by phone 973-544-8372.

Rare Disease Report is proud to be a media partner for this event.

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