It is important to have a special day each year to honor those who are living with Sanfilippo Syndrome today, and those who have passed away. 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.
Resources for Celebrating
A suite of resources and materials are at your fingertips for celebrating World Sanfilippo Awareness Day.
Download the one-page handout, logos, and social media images. All of which are available in multiple languages.
Way Your Family Can Spread Awareness:
1. Do the “Hands Of Hope” Viral Challenge
Your child’s hand is by far the most precious thing you’ve ever held. In moments of comfort. In moments of joy. In moments of sadness or illness.
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. 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.
Here are two sample messages to include in the post with your photo (or choose your own words):
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. #WorldSanfilippoDay #CureSanfilippo #PreciousHandsChallenge
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.
2. Use the Official Logo
Please use and share the official logo for World Sanfilippo Awareness Day. A variety of file types and versions, including in multiple languages, are available.
*Please remember: With all posts, include the hashtag #WorldSanfilippoDay
3. Upload the Facebook Profile Frame
Facebook allows you to upload “Frames” that friends and followers can select and add to their Facebook profile image. This will overlay over your existing profile photo or you can upload a new profile photo that fits nicely, spreading awareness.
A “World Sanfilippo Awareness Day” Facebook frame has been created and this is an EXAMPLE of how it will display when people add it to their profile image.
To upload a frame for friends and followers to find and use:
- Download the World Sanfilippo Awareness Day Facebook frame file to your device.
- Go to Facebook’s Frame Studio. and follow the steps to submit it for approval.
- Once you receive approval, let your friends and followers know it is available.
4. Share an Image on Social
Keep spreading the word by using this image overlay to create a custom image featuring your child to post on social.
This is an EXAMPLE of how the overlay looks when added to a personal photo. *Please remember: With all posts, include the hashtag #WorldSanfilippoDay.
To make your own, download the overlay and use your favorite photo editing tool to layer it over your favorite picture.