Add Your ‘Hands of Hope’ on World Sanfilippo Awareness Day

Marked Nov. 16, campaign targets policymakers, scientists, others

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by Mary Chapman |

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Different hands joining together in a circle.

From joining the “Hands of Hope” challenge to adding a Facebook profile frame, supporters globally are poised to mark World Sanfilippo Awareness Day, observed each Nov. 16 to bring attention to the genetic disorder thought to affect one in 70,000 individuals.

The awareness campaign targets the general public as well as policymakers, scientists, industry representatives, and health professionals.

Due to the disorder’s rarity and its resemblance to other conditions, such as attention deficit/hyperactivity disease and autism, awareness and education are key to better recognition, understanding, and management of Sanfilippo syndrome, a form of childhood dementia. Earlier diagnoses can mean speedier access to patient and caregiver support and to clinical trials, if desired.

“It is so important to have a special day each year to honor those who are living with Sanfilippo syndrome today, and those who have passed away,” the Cure Sanfilippo Foundation states on an awareness day webpage. “And not just the children, but the families also. Let’s get people talking about Sanfilippo syndrome. That’s the purpose of World Sanfilippo Awareness Day on Nov. 16th.”

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The organization has a host of ways individuals, organizations, and researchers can participate, in addition to shareable resources such as social media images, logos, and a one-page informational sheet, all downloadable and available in multiple languages. Participants are asked to include the hashtag #WorldSanfilippoDay on all awareness day social media posts.

An awareness day Facebook frame is available, as is a custom overlay that can be used to feature a photo of their child on social media.

The official awareness day logo, which depicts a parent and child holding hands, pays tribute to the universal love and bond that exists between the two.

“Any parent can relate to the precious years you are able to hold your little [one’s] hand, and it has special meaning for a parent of a child with Sanfilippo syndrome,” the organization states on its awareness day webpage.

In keeping with that logo, supporters are encouraged to again join the “Hands of Hope” viral challenge, which calls for people to post on social media an image of their child’s hands in theirs and to challenge others globally, including those unaffected by Sanfilippo, to follow suit, adding the hashtags #CureSanfilippo and #HandsOfHope.

“Your child’s hand is by far the most precious thing you’ve ever held,” the organization states on a webpage that describes the challenge. “In moments of comfort. In moments of joy. In moments of sadness or illness.”

Cure Sanfilippo offers sample messages for inclusion with their “holding hands” photo, including: “They sure do grow up quickly! I love these little 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 fatal childhood disease which takes away all 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.”