In honor of Rare Disease Day, February 28, 2015, Congenital Hyperinsulinism International (CHI) held the inaugural Sugar Shindig in Austin, Texas in support of patients living with congenital hyperinsulinism. Rare Disease Day is the day of the year when people all over the world are raising awareness of rare conditions and raising funds to help people living with them. This year, the theme of World Rare Disease Day was “Living with a Rare Disease: Day by Day, Hand in Hand.”
The CHI Sugar Shindig followed that theme and the evening was a wonderful example of patient families, academic centers, physicians, and members of the health care industry gathering together to work toward a bright future for children and adults living with HI. The challenges of living with this rare condition, progress toward the development of better treatments, and support initiatives for patients and their families were featured subjects at the event.
Please scroll down below the slideshow of highlights from the inaugural Sugar Shindig to learn more about this event.
The event was organized by an incredible group of women from Texas who formed a committee to put on the event and support CHI. Led by Dr. Davelyn Hood, President of CHI, they put together a beautiful event full of meaning.
Despite the cold weather and snow across most of the country including Texas, CHI fans gathered from around the country, state, and city to support the work of the organization, and learn more about the condition and its champions. Dr. Hood was a fantastic Master of Ceremonies.
Dr. Paul Thornton, Director of the Hyperinsulinism Center at Cook Children’s Medical Center and one of the world’s leaders in HI research and clinical work, spoke about the importance of raising awareness of the condition emphasizing the importance of early diagnosis. Dr. Thornton emphasized the important role CHI plays and will continue to play in raising awareness of the condition.
Dr. Charles Stanley, a leading clinician and researcher in the field of HI, talked about the importance of research in the field of HI. He talked about some of the great strides that have been taken in treating the disease due to recent research. He spoke specifically about gene discovery and PET scan capability and research, which in tandem have led to a cure for patients with focal disease.
Two HI moms, Elise Falk and Amber Ross spoke about what CHI means to them, how important it has been for them to be part of a community of parents raising their kids with HI, and how valuable the information sharing has been for them which led to important treatment decisions for their kids.
The CHI Honors section of the evening included awarding Dr. Matthew Hopkins, Founding President of CHI, with an award for his outstanding contribution to patient advocacy.
Shindig guests were entertained by the incredible country crooning duo Mark & Tommy Sammons and their band. The live auction of Austin’s finest sweets was great fun and raised significant funds for CHI programs. All in all, it was a great night.