For the first tweet we had to share a video that captures Sadie’s silly self! #hotdiggitydog

Sadie loves a good selfie! I’m still not sure how she does the photo effects! #nationalselfieday #selfie #selfieday

We’re looking for auction items and sponsors for 🦋Sadiepalooza🦋. On August 24 and 25, we’ll be hosting a 5k, golf tournament, silent auction, and more in Troy. If you or your company would like to contribute to the silent auction or sponsor one of the events, please let us know

🇺🇸 Happy 4th y’all! 🇺🇸

Tell the FDA: kids with Sanfilippo can’t wait. A promising gene therapy was delayed up to a year over paperwork. Sign the letter before Aug 6 to demand urgency. 🔗 unc.az1.qualtrics.com/jfe/form/SV_0i… #ApproveHopeNow #RareDisease #Sanfilippo #NoMoreDelays

Today’s the last day. The FDA delayed a gene therapy for Sanfilippo — a disease that steals children’s voices, mobility, and memories. We can’t wait another year. 📣 Sign the letter before midnight: tinyurl.com/UNC-RareDis #ApproveHopeNow #NoMoreDelays #WalkTheTalkMakary

The science is ready. The system is not. Kids with ultra-rare diseases like Sanfilippo are losing abilities because the FDA uses outdated processes built for large populations. Time is brain. If the science is solid, get treatments to patients NOW. biocentury.com/article/656694…

Commissioner Makary, You fast-tracked weight-loss drugs in <55 days. My child has Sanfilippo, a type of childhood dementia. There are no approved treatments. UX111 has 10+ years of data. Kids on it are thriving while mine is dying. Please save our children.