Inaugural Member Organization Meeting of Epilepsy Alliance America
Inaugural Member Organization Meeting of Epilepsy Alliance America
Thirty-eight staff members from 13 of the member organizations of Epilepsy Alliance America came together in Charlotte, NC on March 4-6, 2024 for the Inaugural Member Organization meeting of Epilepsy Alliance America.
Recognition
We had the opportunity to celebrate some of the Milestone Achievements of Epilepsy Alliance America since our founding in 2018. Special Recognition was provided to the Epilepsy Information Service at Wake Forest for their support of individuals across the country through their 1-800 line. Epilepsy Alliance Florida (Monica Rodriguez and Karen Basha Egozi) was recognized for being the Financial Office of record for our first five years. The team from Epilepsy Association of Western and Central PA was recognized for bringing their initiative, #1in26day, to the network. We celebrated Epilepsy Services of New Jersey for hitting the milestone (back in the fall) of training 100,000 people in Seizure Recognition and Response. Special acknowledgement was provided to our marketing partners at DeanHouston, led by our founding board member, Dale Dean, for their work to elevate the profile of Epilepsy Alliance America since our inception.
Sharing
SHARING was a primary goal of the Member Organization meeting.
Special Thanks to Amanda Mitchell, MPH, LCCE, our Program Chair and Executive Director of Epilepsy Alliance Louisiana for ending our first day with a dynamic session about Program Evaluation. Participants had the opportunity to help shape the evaluation efforts of Epilepsy Alliance America as well as learn from their peers: Kent Dettlo from Epilepsy Alliance Florida; Ella Mootz from Epilepsy Support Network of Orange County and Kari Jones, MS, CHES from Epilepsy Advocacy Network. We can’t wait to roll out new initiatives for people with epilepsy and our member organizations in 2024 and to continuously improve them using some of the evaluation techniques shared at the meeting.
Special thanks to Pat Turner from DeanHouston and Marchet Eaddy from Epilepsy Alliance Florida for a dynamic, interactive presentation on the importance of Marketing through Social Media for Epilepsy Alliance America and our member organizations. It was fascinating to learn about using AI for assisting with content creation and thank you Pat Turner for the Pro-Tips on taking better photos and videos using our iPhones!
Other informative presentations were led by Epilepsy Alliance America Board members including Peggy Beem Jelley, Liza Gundell and Jeff Sinsebox. Development professionals Lorena Delancey, from Empowering People’s Independence, and Colleen Fulkerson, from Epilepsy Association of Western and Central Pennsylvania, led enlightening sessions about fundraising best practices.
The Member Organization meeting was made possible through the generous sponsorship of SK Life Science, Inc.; Neurelis, Inc., Jazz Pharmaceuticals and Catalyst Pharmaceuticals, Inc.
Collaboration is at the core of Epilepsy Alliance America’s mission. The inaugural Member Organization meeting of Epilepsy Alliance America was the embodiment of this value.