People around the world are making a significant difference for children with Sanfilippo Syndrome. Each day, an effective, approved, and available treatment for Sanfilippo Syndrome is closer.
Each year, World Sanfilippo Awareness Day is celebrated by this community on Nov. 16. It is a day devoted to spreading awareness and sparking conversations globally about Sanfilippo Syndrome, a disease few have heard of. This special day honors children around the world living with Sanfilippo Syndrome today, and those who have passed away. It also honors the families of these precious children.
World Sanfilippo Awareness Day kicked off in 2019 and was embraced by the community that battling Sanfilippo Syndrome.
World Sanfilippo Awareness Day is not Foundation-specific. It is for anyone who would like to help spread awareness for Sanfilippo around the world on this dedicated day.
The official World Sanfilippo Awareness Day logo shows a parent and child lovingly holding hands.
Everyone is welcome to join in celebrating World Sanfilippo Awareness Day 2020. See ideas for participating and resources.
Similar to last year, as part of this awareness day, there will be a social media “call to action” inviting people to share photos of their “Hands of Hope” with the hashtag #HandsOfHope.
For World Sanfilippo Awareness Day 2020, a new “call to action” has been added. People are invited to make a sign that says, “What is Sanfilippo? Google it.” and post a picture of you or your children holding these sign on social media with #GoogleSanfilippo. Ask others to do the same, in the hopes new people look it up and learn a bit about it.
“Thank you to the families, supporters, researchers, organizations and foundations, and institutions dedicated to this cause and the daily sacrifices you make to continue the work,” said Cure Sanfilippo Foundation President Glenn O’Neill. “It is inspiring.”