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...
Parent News
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...
Podcast Episode 3: Free educator guide; Dopamine & reversing Autism behaviors + more
The Aug. 23, 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...
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...
Advancing the Understanding of Special Education and Therapeutic Needs of Children with Neurodegenerative Disorders
The challenges of the pandemic shined a light on the critical role of special educators and rehabilitative therapists to protect the skills of children’ with neurodegenerative disorders. This academic publication and white paper provides teachers with a guide for...
Podcast Episode 2: In Memory of Reagan; New testing created; $1M granted for 5 new projects + more
It's been just two weeks since the last episode of the Foundation's "A Close Look at Sanfilippo" podcast, and there's already so much to share! The podcast's 10 minutes dives into: The life and importance of Reagan McGee; How your support of the Foundation helped...
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...