Many families have grown significant followings as people learn about their lives with Sanfilippo and their wonderful children. One mom, Noelle Pacl (@Love_Logan07) has more than 1.5 million followers of her account, which she started just earlier this year. She shares daily life of her son Logan Pacl and answers people’s questions.
Cure Sanfilippo Foundation also took the plunge earlier this year and created a TikTok account, @CureSanfilippo. We are slowly building our content and excited about TikTok’s ability to reach more people and spread awareness about Sanfilippo Syndrome and need for continued research to find a cure.
Sanfilippo families to find on TikTok
Many families of children with Sanfilippo Syndrome are sharing what it’s like living with Sanfilippo. These are some with TikTok accounts largely dedicated to raising awareness about Sanfilippo. They frequently post about their perspective and life as caregivers, answers questions about how Sanfilippo impacts their families, and let you glimpse thier lives, the good parts and the hard ones.
Logan and fam (@Love_Logan7)
Haidyn’s Hope (@HaidynsHope)
Loralei’s Lovely Life (@LoraleisLovelyLife5)
Mrs. Nesbitt – Carter’s Mom (@IAmMrsNesbitt)
Brittany Lagarde – Sawyer’s Mom (@HappyLagardeless)
Save Connor (@SaveConnorNow)
Saving Sadie Rae