Lily Brown has experienced firsthand the magic in the match of parent to parent support after her daughter was diagnosed with a rare genetic condition at age 3. As Co-Executive Director for Parent to Parent USA, she is dedicated to strengthening the Parent to Parent community so that no parent feels alone, ever. She leads the organization in the areas of development, program evaluation, volunteer engagement, and fiscal management. She draws on her entrepreneurial background to scale operations using a combination of talent and technology.
In today’s episode, Lily shares her own personal story of hope and how she and her husband, David, worked together to advocate for their amazing daughter, Suzie, who received an official diagnosis of Cohen Syndrome at the age of 3. They even went so far as to relocate from Texas to Pennsylvania to give Suzie access to what they felt were the best resources available to meet her needs and offer the best quality of life.
Emily, Ashlyn and Lily all connect over their shared story of having daughters with rare medical complexities and how connecting with other families for support has helped heal wounds, open unexpected doors and led to amazing friendships and discovering untapped strength within.
We want to hear from you if anything from this episode connected with your or if you would like to share your story of advocacy! Contact us at [email protected] or send us a message through our social media accounts.
To be connected with your local Parent to Parent chapter, visit: https://www.p2pusa.org/parents/
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Instagram: https://www.instagram.com/p2pusa/
Cohen Syndrome Association: http://www.cohensyndrome.org/
Cohen Syndrome Research Foundation: https://csrfoundation.org/
