The 2016 Sugar Soirée held on November 5 raised over $186,000 with well over 200 people donating and 170 people attending the event. The evening very special the donations raised will have a huge impact on the lives of people born with the rare condition, congenital hyperinsulinism (HI). This signature Congenital Hyperinsulinism International (CHI) event will make it possible for CHI to continue to support promising research projects leading to better treatments and a cure, raise awareness of HI to end preventable brain damage and death, and support and help families access lifesaving medications and treatment.
The theme of the Sugar Soirée this year was nautical owing to our location on the Boston Seaport at the Renaissance Boston Waterfront Hotel. In porthole frames, CHI shared the beautiful faces of children affected by HI from all over the world. We were so thrilled to have Sheinelle Jones, Co-Anchor of NBC News’ Weekend Today, as our host. She did an incredible job!
Those in attendance learned firsthand what it is like to live with this condition from Logan Green, a Wellesley High School 9th grader. Logan was honest, forthright and strikingly articulate, and we are so grateful to him for his willingness to share his experiences with you.
It was such an honor to present Dr. N. Scott Adzick, Surgeon-in-Chief at the Children’s Hospital of Philadelphia, with the CHI Be My Sugar Award for Surgical Excellence. Thanks to Dr. Adzick, hundreds of babies born with both focal and diffuse HI are leading full and healthy lives.
(Click here to read a press release about N. Scott Adzick receiving the CHI Be My Sugar Award for Surgical Excellence at the third annual Sugar Soirée)
How special it was to award Jim Nestor the CHI Be My Sugar Award for Patient Advocacy. Jim was instrumental in bringing the global patient community together by creating one of the first online international rare disease patient networks for families.
The event would not have been possible without our fabulous event committee led by Sheila Bose, Turaya Bryant Kamau, and Mason Smith, as well as our generous corporate sponsors: BioMarin, XOMA, The Children’s Hospital of Philadelphia, Teva, Sentinel Benefits Financial Group, Zealand, Counsyl and Quest Diagnostics.
CHI is so grateful to all who supported our Sugar Soirée. The Sugar Soirée donors are leading the way toward a brighter future for all affected by HI — their shining light is pouring through the portholes.