In honor of Rare Disease Day, February 28, 2015, Congenital Hyperinsulinism International (CHI) will be holding the inaugural Sugar Shindig in Austin, Texas in support of patients living with congenital hyperinsulinism (HI).
This year, the theme of World Rare Disease Day is “Living with a Rare Disease: Day by Day, Hand in Hand.” The CHI Sugar Shindig (You can make a donation or purchase tickets at congenitalhi.org/shindig) follows that theme and will emphasize the importance of patient families, academic centers, physicians, and members of the health care industry all working together 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 will be the featured subjects at the event.
The Sugar Shindig will be held at the Lone Star Court Hotel, “an Austin, Texas hotel with a timeless twist.” CHI fans will gather from around the country, state, and city to support the work of the organization, and learn more about the condition and its champions. 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, will headline the evening with a talk on the condition. Other HI experts from Texas and around the country will be featured. Prior to the Rare Disease Day educational program, country crooning duo Mark & Tommy Sammons and their band will be returning to Austin to entertain Shindig guests with country and Southern rock favorites during the Cocktail and Gourmet Grub Hour.
The Shindig Committee led by Davelyn Hood, President of the CHI Board of Directors has been extremely active and is bursting with enthusiasm as they raise funds for CHI and plan the event. “I left NYC feeling so inspired after the Sugar Soirée and felt it was time to bring that level of awareness to my home state,” Said Hood. “With the exciting development of potential new treatments for children with HI, it just felt like the right time to host a Sugar Shindig! And what better time than Rare Disease Day? There is so much to do to get the word out about hyperinsulinism, early detection and proper treatment, and events like the Soirée and the Shindig help raise awareness and the necessary funds for CHI to fulfill its mission of improving the lives of those living with hyperinsulinism,” Hood continued.
The Shindig Committee includes parents of children with HI and some of their dedicated family members and supporters, and what a team they are. “CHI literally changed our lives,” shared HI mom and Shindig Committee Member, Amanda Motes. “Our daughter was receiving medicine 3 times a day (one of which was at 11:00 pm), which was always put in food. It was often a struggle and was accompanied by a literal song-and-dance from my husband and I to get this final meal and medication in her. We dreaded it. We never knew how that last feeding was going to go, and our days (even by 4 years of age) were never over before midnight. Missing that last medication and feeding carried great risks each and every night.
Through reading the other parents’ stories on the CHI Facebook group, I found out about Dr. Thornton’s HI clinic. We made an appointment within weeks because we were concerned about the developmental toll that her medication schedule was taking on her. Dr. Thornton set-up a fasting study and we found out that not only could we switch her medication schedule to twice-a-day (!), we could also safely reduce the dosage of her medication. The lifestyle changes have been immeasurable. We could not be more grateful to the Cook Children’s team and CHI. There’s no way to properly thank this community, but participating in the CHI Sugar Shindig committee is my first attempt.”
A successful Shindig will mean CHI will be able to help more families like Amanda’s. By attending or donating to the Shindig, supporters will be raising awareness of the condition to significantly reduce unnecessary brain damage and death and improve the quality of life for HI patients.
