ALS United Connecticut staff has been active for the past several months, promoting important issues in the state. Executive Director Jacky Rose and Director of Programs Amy Chickles represented ALS United CT at the Rare Disease Forum in early March at Jackson Labs. Amy presented to the Rare Disease Advisory Council on April 23, 2024. ALS United CT participated in the Denise D’Ascenzo Rare Disease Walk on April 27, which brings attention to rare disease issues throughout the state.
In addition, we worked closely with Big Y World Class Market in Milford and were the May organization for their community bag program. For each bag purchased, Big Y gave ALS United CT $1. Thank you, Big Y, for being such a friend to the ALS community!
ALS United CT didn’t stop there. In addition to working closely with the very successful Dan the Man 5K Walk/Run event, Jacky also joined WTNH’s Morning Buzz to chat about ALS Awareness. Rose and Chickles ended the month of May by traveling to Washington D.C. for the I AM ALS Community Summit. While there, the duo from ALS United CT and some past caregivers chatted with legislators, attended seminars, and heard from patients, doctors, and fellow ALS United members about issues facing the ALS community and developed tactics to address these issues.