Welcome to the podcast! This week’s guest is Gay Grossman. Gay shares about her experience in the rare disease community, life with her daughter, and ways to be an awesome advocate for yourself and your special needs child. This is an episode you don’t want to miss!
Gay gives us the backstory to all the years of trying to find a very rare diagnosis for her daughter. Fast forward to today, over 20 years later, and Gay has advocating for her family down to a science. She emphasizes that it’s not about the battle or what we get as the parents. It’s about how she can help her daughter become more independent and have a better life. She also is subsequently helping the future special needs community who benefits from these changes she fights for for her daughter.
Who is Gay?
Gay has been advocating in the rare disease community for over twenty-five years. She’s an advocate of genetic testing, shared data, and patients leveraging their data. Gay has become an expert of private insurance and social services through state and federal policy for those affected by various disabilities.
* Co-founded ADCY5.org, the foundation for the rare ADCY5-Movement Disorder Syndrome. ADCY5.org supports world-renowned researchers studying the gene and its variant. The communities involvement has led to treatment of symptoms. She continues to build a community of hundreds with this disease, when they started with only 1 patient.
*In addition to being the keynote speaker at the Biocom Annual Dinner, she has spoken to audiences of up to 1,000 attendees about her experience of having a child undiagnosed for 15 years, getting a diagnosis through whole genome sequencing, and building a community around the unknown genetic disease.
*Together with her daughter Lilly, she co-authored a children’s Rare Disease book, We Are All Rare, providing a Rare Disease learning tool for elementary school aged children.
*Gay applies her early career experience with Glaxo to clearly explain the burden of disease, to educate through advocacy, and build relationships with stakeholders. While at Glaxo, she was recognized as the top salesperson in the district and a year later, recognized with the Regional Director’s Award.
*While attending Ohio Wesleyan University, Gay envisioned, organized, and started an all-inclusive event to bring together students, alumni, faculty, and staff. Today, The President’s Ball is the longest standing tradition, held yearly at the university. The first President’s Ball was held in 1985.
*Currently the Director of Patient Advocacy & Engagement at gene therapy company, Neurogene Inc., where she applies her rare disease personal experience to help families better understand the role foundations can play in the drug development lifecycle.
Connect with Billie:
Facebook: www.facebook.com/billieshort
IG: www.instagram.com/bgshort68
Website: www.conversation4change.com
Email: billieshort68@gmail.com
Connect with Kara:
IG: https://www.instagram.com/Kararyska/
Website: https://www.kararyska.com/
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