Spurring conversations on World Sanfilippo Awareness Day

Nov. 16 event will offer both virtual and in-person participation opportunities

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by Mary Chapman |

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An illustration shows a lone rare person in a crowd.

A primary goal of this year’s World Sanfilippo Awareness Day, observed annually on Nov. 16, is to get people talking about Sanfilippo syndrome, a rare disorder thought to affect 1 in 70,000 people.

“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 Cure Sanfilippo Foundation states on an awareness day webpage.

The event, which seeks to raise awareness of the genetic disorder that leads to a form of childhood dementia, targets lawmakers, scientists, health professionals, and industry representatives, in addition to the general public.

The foundation offers a number of ways individuals, researchers, and organizations can participate, in addition to shareable, downloadable resources. These include social media logos, images, and an informational sheet about the global awareness day, all in multiple languages. Also available are a Facebook frame and a custom overlay that event supporters can use on their social media platforms to feature a photo of their child.

Participants are encouraged to include the hashtag #WorldSanfilippoDay on social media posts.

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Join the viral ‘Hands of Hope’ challenge

The official awareness day logo depicts a parent and a child holding hands, expressing the universal bond that exists between them.

In keeping with the logo, the organization is again presenting its “Hands of Hope” viral challenge, in which participants post on social media a photo of a child’s hands in theirs. All are encouraged to add the hashtags #HandsOfHope and #CureSanfilippo, and to challenge others to follow suit.

“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,” the organization’s website notes.

A sample message to include with the post 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. 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.”

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Where to attend in-person events

On Nov. 15, the Cure Sanfilippo Foundation will mark the awareness day by presenting “Give Back Night” at a Chili’s restaurant in Hollywood, Florida. The event will honor Sanfilippo patient and Hollywood resident, Victoria, and 20% of proceeds will go to the organization to ultimately support those with the disease and their families.

There also will be a weeklong observance called “Purple Week” in The Woodlands, Texas, leading up to World Sanfilippo Awareness Day. Events held from Nov. 12-16 include a “Do Good With Chipotle” foundation fundraiser and an in-store and online holiday shopping event at Kendra Scott called “Shine Bright, Do Good.” In the holiday shopping event, 20% of sales will support the organization. On the awareness day, supporters are asked to wear something purple, the color representing the campaign, and post photos of themselves doing so.

In Australia, the Sanfilippo Children’s Foundation also offers ways to spread awareness — including by hosting a “Sprinkles for Sanfilippo” morning tea fundraiser at a participant’s school, workplace, or community center.

Other suggestions include telling people about the awareness day and sharing the organization’s website, and heading to a landmark specially illuminated in purple and posting a selfie on social media of them with the structure.

“It is important to have a special day each year to honor [Sanfilippo families],” the Cure Sanfilippo Foundation’s website states. “Let’s get people talking about Sanfilippo syndrome.”