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Recent Posts
- How I answer kids’ questions about my daughter with Sanfilippo
- Advocates gear up for World Sanfilippo Awareness Day
- Hope and anguish collide with news of the first Sanfilippo treatment
- Children sought for clinical trial of Sanfilippo syndrome treatment
- FDA approves new gene therapy as first treatment for Sanfilippo A
- My son is starting to ask questions about his special needs sibling
- Groups invest $5.5M to expand access to experimental Sanfilippo B drug
- Moving may be good for our daughter, but the thought of it seems daunting
- Online research platform for Sanfilippo families goes live
- Thinking about my daughter’s future includes planning her funeral