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Parent News

Using TikTok to spread awareness about Sanfilippo Syndrome

Families seizing new opportunity to educate people about Sanfilippo TikTok has become a booming social media platform for people sharing all sorts of content, including families of children with Sanfilippo. Many families have grown significant followings as people...

Podcast Episode 4: Teacher worksheet; Sanfilippo on TikTok + more

The Sept. 7, 2021, episode of the Foundation's "A Close Look at Sanfilippo" podcast spends 10 minutes (and a little more in this episode) diving into five hot topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no...

Family Friday Blog: The Howard Family

Get to know the Howard family – Chris, Amanda, Abby, Grace, and Blake!Find out what the past year has been like in their lives with this week’s Family Friday.Get a glimpse into living with Sanfilippo Syndrome through the Howard family's honest and insightful...

Launch of limited edition “Inclusion is Awesome” apparel line

Inclusion is Awesome! Inclusion is powerful. Inclusion is beautiful. Inclusion is important. And the importance of inclusion extends beyond the children and families with Sanfilippo. It matters for everyone. Help tell the world about the importance of inclusion with...

Worksheet to help your child’s teacher get to know them quickly

"Dear Teacher, I'd like to help you get to know my child" Parents can complete this worksheet to expedite teachers getting to know their child. Each new school year starts with a ramp-up period of your child's new teacher and support people getting to know them. This...

Family Friday Blog: The Means Family

Get to know the Means family – Mike, Jen, Abigail and Sadie!Find out what the past year has been like in their lives with this week’s Family Friday.Get a glimpse into living with Sanfilippo Syndrome through the Means family's honest and insightful perspective. The...