I was in Chicago a few weeks ago, and I happened to be staying in the same hotel as the annual MAGIC Foundation convention. I’ve known about the Foundation for a while due to its education and advocacy support for conditions with strong ties to pediatric endocrinolgy. In fact, I often use information from the Foundation as a source for families. This coincidence turned out to be a great opportunity for me. I had the chance to reconnect with several collegues from the pediatric endocrine community who were speakers at the conference. I aslo reconnected with a special family that I cared for while in Nashville.The convention itself is not a typical medical meeting. It is focused on the social part of families meeting other families as well as education, and research. I felt a little sad that I missed the dance on Friday night for a dinner meeting.
Perhaps, the most “magical part” of the MAGIC Foundation is that it was created by families and not by physician or other scientists. Its mission is one of support for families as well as adults who have chronic conditions.
Pediatric endocrinology is not a well-recognized or highly visible pediatric sub-specialty which is partly due to the rareness of the conditions that we care for. For example, here are the annual incidences for some of the conditions of children and individuals who may attend a MAGIC Foundation event.
- Russell-Silver syndrome – 1 in 3000 to 1 in 100,000 people
- Septo-optic dysplasia – 1 in 2000 people
- Turner syndrome – 1 in 2500 people
Information, support, and advocacy make a huge difference in the quality of care that I am able to provide to children and their families. I want to say thank you to the Magic Foundation as well as recognize a few other organizations that make a difference in the lives of children that I care for and their families such as the Juvenile Diabetes Research Foundation, National Down Syndrome Society, National Organization for Rare Disorders, and Little People of America.