Supporters Gear Up for Nov. 16 – World Sanfilippo Awareness Day

On Nov. 16, World Sanfilippo Awareness Day, supporters will bring global attention to the rare neurodegenerative disorder, hopefully sparking conversations globally about the community and its needs.

From sharing images on social media and using a special Facebook photo frame, to displaying the official Awareness Day logo and participating in the “Hands of Hope” viral challenge, supporters are poised to observe the second annual event. Sanfilippo syndrome, which causes progressive behavioral and intellectual disabilities, with symptoms usually beginning between ages 2 and 6, affects about about 1 in 70,000 births.

“This special day honors children around the world living with Sanfilippo today, and those who have passed away. It also honors the families of these special children,” the Cure Sanfilippo Foundation states on its website.

New for this year, supporters are invited to make a sign that states, “What is Sanfilippo? Google it.” They are then asked to post a photo on social media of them or their children holding the sign, using the hashtag #GoogleSanfilippo. The participants also are encouraged to ask others to follow suit, in hopes that increasingly more people learn about the disease.

A host of resources and materials, some in multiple languages, are available for downloading, including an informational handout, logos, a Facebook photo frame, and social media images. The campaign’s official logo pays tribute to the special bond between a parent and child.

Maintaining that a child’s hand is more precious to hold than anything else, the campaign is inviting supporters to join the “Hands of Hope” viral challenge. It calls for participants to post on social media a photo of their child’s hands in theirs, and to ask others to do the same. Sample messages are provided to accompany the photos, to be shared along with the hashtag #WorldSanfilippoDay.

“I love these hands I’m holding,” one sample message states in part. It goes on to say: “I’m sharing this today in support of World Sanfilippo Awareness Day. Not all parents get to watch their children 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 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.”

The message ends on a positive note: “With awareness comes more research to find a cure, and HOPE for the children and families.”

Also available is a Facebook overlay that can be used by each participant to create a custom image featuring his or her child that can be shared on social media. Awareness Day T-shirts also are available for purchase.

“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,” Glenn O’Neill, Cure Sanfilippo Foundation president, said in the organization’s Awareness Day announcement. “It is inspiring.”