Episode 14 - A Life of Volunteerism and Action: A Conversation with Leslie Greenfield on Seeing a Need and Filling It

Today my guest is a dear friend and colleague - Leslie Greenfield. Leslie has lived a life of volunteerism while raising her daughter Heather, who has Rett syndrome. I think you will find inspiration from this conversation. In her life, Leslie has worked tirelessly to fill needs she identifies.
Leslie currently serves as the New Jersey Regional Representative for the International Rett Syndrome Foundation. In this role she supports new families as they face this terrifying diagnosis and learn to navigate a new way of life. Most importantly Leslie is wife to Mike and they have 2 daughters, Holly, and Heather, who has Rett syndrome. In this episode Leslie talks about their journey to find out what was wrong with Heather when she began to regress at about 9 months of age. You'll hear about their search for answers as they struggled with persistent seizures, loss of skills, and finally learned the right diagnosis. Once learning Heather had Rett syndrome, Leslie almost immediately jumped into action. Heather was 10 years old then and she and Mike have been advocating, educating and spreading awareness of Rett syndrome ever since.  Together with some passionate families Leslie and Mike founded the New Jersey Rett Syndrome Association. They have hosted several local seminars, family gatherings and fund-raising events. In 2011 NJRSA partnered with Monmouth University to create the Program for Rett Research and Support for Rett - they provide education and support and communication therapy for individuals with complex communication disorders. Through their work they are teaching graduate students about working with individuals who are nonspeaking and how to help them access augmentative communication.

I hope you enjoy my conversation with Leslie. There are  so many wonderful takeaways - resilience, strength, ups and downs, and perseverance. She started something from nothing and it’s a model for success. You can reach Leslie through email leslieg417@gmail.com and njrsa.org
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