Recent Posts
- Hurricane Beryl reminds us of all we take for granted
- FDA puts Sanfilippo A enzyme replacement therapy on fast track
- Milestones can bring unexpected tides of grief with Sanfilippo
- High school was a turning point for me and my Sanfilippo sister
- Connecting with my daughter is difficult due to Sanfilippo syndrome
- FDA clears Phase 1 trial of GC1130A for Sanfilippo type A
- Moving into a new home doesn’t change our priorities
- Economic burden of Sanfilippo in US over 2 decades may top $2B
- A trip to the ER requires me to put fear aside and advocate for my son
- Grappling with the fear that I’ll get blindsided once again