World Sanfilippo Awareness Day is about spreading awareness and sparking conversations globally about Sanfilippo Syndrome, a disease few have heard of. This special day of Awareness is in honor of the children around the world living with Sanfilippo Syndrome today, and those who have passed away. It also honors the families of these precious children.

The community of Sanfilippo families, foundations, scientists and researchers, and industry partners and collaborators around the world have dedicated November 16 as World Sanfilippo Awareness Day.

You can join in spreading awareness on World Sanfilippo Awareness Day by participating in “Hands of Hope” on Nov. 16.  Simply post a photo of your child’s (or children’s, or simply the one you love) hands in yours on social media and challenge others to do the same.

Include the message: “I love these hands I’m holding. I’m sharing this today in support of World Sanfilippo Awareness Day. Not all parents get to watch their kids grow up healthy and become adults. Sanfilippo Syndrome is a devastating and fatal childhood disease which causes severe dementia and takes away a child’s skills early in life. Very few people have ever heard of it, and I hope you’ll join me in sharing a photo of you holding the hands of the ones you love to help spread awareness for Sanfilippo Syndrome. With awareness comes more research to find a cure, and HOPE for the children and families. #curesanfilippo #handsofhope”

The goal is to spark people around the world to post pictures of them holding hands with another. And not just those directly impacted by Sanfilippo, but any person holding the hands of the ones they love.