Ben is a musician based in Atlanta, GA. His latest album, Grown Up Love, was written in the wake of his daughter Carmela’s diagnosis with Rett Syndrome to give his family strength in the most difficult time of their lives. “Lucky Us” has become our constant reminder to appreciate the beauty right in front of us all and has also touched others in the patient community. Ben is grateful to Alcyone for leading the way to a brighter future for these girls. Lucky us!
Heidi is the Vice Chairman of Rett Syndrome Research Trust (RSRT) and lives in California with her family. Her daughter Hannah was diagnosed with Rett Syndrome shortly after her third birthday. Searching for information on the disorder, Heidi found the RSRT website the very day it launched, and she immediately became involved, first through a letter-writing campaign that raised $100,000 for research. In 2009, she spearheaded the first Hope for Hannah fundraiser. A few years later she joined forces with Marci and Rudy Valner, and the event became Hope for Hannah & Gaby. Today, the event Heidi launched has expanded to become Reverse Rett LA, is co-chaired by the Epstein family and three others, and has a committee of 63 dedicated friends and families. Since Heidi started the event it has raised a remarkable $10 million in total for RSRT.
Lena DeSantis is the proud mother of 10-year twins, one of which has Rett syndrome. She is active board member of the Center for Therapeutic Riding East End (CTREE), and an advocate for inclusion in her community. Professionally, Lena is a Senior Managing Environmental Planner with Anchor QEA, an environmental consulting firm with offices through the US focused on aquatic systems. She has 20 years of experience in environmental planning and policy and has worked extensively on sustainability and climate change resiliency planning. She holds a MA in Environmental Public Health from the University of California at Los Angeles and a BA in Biology from Wesleyan University.