Patient Advisory
Patient Advisory<br/><u>Committee</u>

Patient Advisory Committee}

Heidi Epstein
Vice Chairman of Rett Syndrome Research Trust and Parent of Child with Rett Syndrome

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.

Heidi Epstein