“If you have a doubt about something with your child or a family member, it’s just really important to keep pushing through and get to the answers.” – Gay Grossman

In this episode, host Katie Taylor speaks with Gay Grossman, a passionate patient advocate and mother, about her journey navigating the rare disease world. Gay shares her experience of seeking a diagnosis for her daughter, advocating for genetic testing, and supporting families through complex medical and educational challenges. Her story highlights the importance of persistence, building a support network, and staying organized. Gay’s insights provide invaluable advice for both child life specialists and parents and caregivers dealing with rare diseases.

Key Insights:

• The significance of early genetic testing in providing crucial information and guiding treatment decisions.

• The importance of building a support network to navigate the medical and educational challenges.

• Staying organized and persistent in the face of numerous medical consultations and uncertainty.

• The emotional and psychological toll of advocating for a child with a rare disease.

• The role of patient advocacy in supporting families and advancing research.

Resources and Tips:

• GeneDx: Genetic testing and counseling services.

• Child Neurology Foundation: Resources for fighting insurance denials and other support.

• Women In Bio and Athena: Support network for women in science and biotechnology.
• Connect with Gay on LinkedInWhen parents feel empowered, everyone wins – kids thrive and the care team excels