Are You Ready for World Sanfilippo Awareness Day?

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by Mary Chapman |

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From posting a photo of their child’s hand in theirs, to switching out their Facebook frame, supporters are poised to mark World Sanfilippo Awareness Day, observed each Nov. 16.

The aim is to heighten awareness of Sanfilippo syndrome, a genetic disorder that leads to a form of childhood dementia, and which is thought to affect one in 70,000 people. In addition to the general public, the awareness effort targets lawmakers, researchers, health professionals, and industry representatives.

Because the disorder is rare and can resemble other disorders, including autism or attention deficit/hyperactivity disease, awareness and education are crucial to improve the recognition, understanding, and management of the disease. The earlier the diagnosis, the faster patients and caregivers can seek support services and, if desired, access to clinical studies.

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“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 Cure Sanfilippo Foundation states on its Awareness Day webpage.

For its part, the organization offers several ways families, other organizations, researchers, and treatment developers can get involved in the event.

“Advocacy foundations and organizations around the world are uniting for World Sanfilippo Awareness Day on Nov. 16,” the Foundation states on another of its webpages. “These are the groups providing support and driving the research that brings hope to families and children.”

As for scientists and biotechnology companies, the Foundation notes that  “Industry partners and collaborators around the world are crucial to moving closer toward finding effective treatments for Sanfilippo syndrome. World Sanfilippo Awareness Day … is an opportunity for the leaders in science, research, and industry to observe this important day together and lift the spirits of the families affected around the world.”

One way all supporters can participate is by joining the “Hands of Hope” viral challenge, which calls for participants to post on social media a photo of their child’s hands in theirs and to challenge others around the world, not just those affected by Sanfilippo, to do the same.

Sample messages are available to accompany the photos for sharing, along with the hashtags #WorldSanfilippoDay, #CureSanfilippo, and #HandsOfHope.

One such sample states: “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 … 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.”

Supporters also are encouraged to use and share the official logo for World Sanfilippo Day, as well as a downloadable informational handout — available in several languages — and social media images.

Participants also are invited to swap out their Facebook photo frame for an Awareness Day one, and using a Facebook overlay to create a custom image featuring their child.

Another way to raise awareness is by buying a World Sanfilippo Awareness Day T-shirt that is emblazoned with the official logo. Shirts for youngsters cost $14, while those for adults are $18 each.