“Celebrating Our Kids” the 2016 AHCF Family Meeting was held in Indianapolis IN in July
Our 2016 Family Meeting in Indianapolis, Indiana took place in July and featured an agenda that was developed with direct input from AHC families. It covered everything from the most up-to- date research findings, stress management techniques, and alternative therapy options.
In addition to generous sponsorship, we were awarded a grant from the rare disease advocacy organization, Global Genes. The grant allowed us to host live webinars of the presentations for the families who could not attend the meeting. We also created a phone app to keep everyone informed about the latest meeting news!
A workshop was held during the meeting to build on the work done at in 2014 with our Medical Advisory Board and other involved researchers and clinicians. A critical goal for this workshop included working towards consensus on definitions and outcome measures that are both clinically meaningful to patients as well as practical in the preparation of natural history studies and clinical trials.
Families learned about the latest research and how to manage some of the symptoms associated with AHC, but they also learned alternative therapies and how to care for themselves as the caregiver and shared their insights in the roundtables. They learned the importance of a Natural History Database for clinical trials while listening intently to the hard facts of what it will take to get there and everyone was invited to participate.
It was also a meeting of firsts:
· 13 families joined us for the first time, even from as far away as New Zeeland!
· It was the first time we had a mobile app and live webinar of the sessions, both a big hit.
· For the first time we had the families pick the presentation tracks that interested them to help set the agenda.
· The clinic held the 2 days before the meeting also utilized a consult model instead of a research model for the first time.
· We had a record number of sponsors, totaling over $21000.
· For the first time we invited vendors from 3 different groups who demonstrated their products to help make life easier for AHC patients.
· On the research front, AHCF presented a check to Dr Kevin Ess and Dr Al George for the next phase of research
· AHCF presented lifetime achievement awards for the first time, honoring Dr Fred Andermann & Dr Ken Silver, recognizing their many years of service to the AHC community.
· And for the first time we gathered outside at the famous Monument Circle for our group picture with over 140 family members, AHC kids, physicians, researchers and speakers in attendance.
Starting with the Meet & Greet, through the Luncheon and finally the Ice Cream Social, the parents and kids got to know one another or reconnect with old friends.
The AHC kids got a special treat with live entertainment throughout the conference in the “kids” room including a magician who was a huge hit! We were surrounded by colorful posters of the kids as we were reminded to “Celebrate” them and their accomplishments throughout the meeting, and most importantly families were grateful for the opportunity to connect with others sharing the same experiences.