In this deeply moving episode of Rising Up Rare, host Ali Lad sits down with fellow NPS1 mom and warrior, Brooke Biddle, to explore the emotional and medical journey of raising her daughter Finley through a rare disease diagnosis, bone marrow transplant, and beyond. From gut instincts that led to a life-saving diagnosis to the complex decisions every rare mom must make alone, Brooke’s story is one of raw strength, fierce advocacy, and hope in the face of impossible odds.

Whether you're a newly diagnosed family, part of the rare disease community, or just seeking a powerful story of resilience—this conversation will leave a lasting impact. Learn why community matters, how motherly instinct can lead to answers, and what it really means to "rise up" when life demands everything of you.

🔎 Topics covered:

• The emotional toll of a rare diagnosis
• Navigating bone marrow transplant as a single mom
• Restarting enzyme replacement therapy post-transplant
• Importance of neuromonitoring and center of excellence care
• The power of rare community events & NPS1 support networks