Eliza O'Neill and her family

Industry partners and collaborators around the world are crucial to moving closer toward finding effective treatments for Sanfilippo Syndrome.  World Sanfilippo Awareness Day, on November 16th, 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. The mission of World Sanfilippo Awareness Day is to spread awareness and spark conversations globally about Sanfilippo Syndrome. 

Resources TO USE 

A suite of resources and materials are at your fingertips for celebrating World Sanfilippo Awareness Day. Click here to access the one-page handout, logos, and social media images. All of which are available in multiple languages. 
ACCESS THE RESOURCES

ways your ORGANIZATION can SPREAD AWARENESS:

1. DO THE “HANDS OF HOPE” Viral CHALLENGE 

For every parent, a child’s hand is by far the most precious thing they’ve ever held. In moments of comfort. In moments of joy. In moments of sadness or illness.

For Sanfilippo parents, this time they are able to hold their child’s hand is even more special and fleeting.

This viral challenge pays tribute to the bond and symbolism of a parent and child holding hands. 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. 

Share the challenge on your social media accounts to help it spread around the world.  Post a photo holding the hands of the ones you love.

Here’s a sample message to include in the post with your photo (or choose your own words):

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. #WorldSanfilippoDay #HandsOfHope #CureSanfilippo


Example of Facebook post for World Sanfilippo Awareness Day

2. USE THE Official LOGO

Please use and share the official logo for World Sanfilippo Awareness Day. A variety of file types and versions are available below.

**** with all posts, remember to type the hashtag #WorldSanfilippoDay 

World Sanfilippo Awareness Day logo

DOWNLOAD THE LOGO:
World Sanfilippo Awareness Day logo – full color (.JPG)
World Sanfilippo Awareness Day logo – full color (.PNG)

World Sanfilippo Awareness Day logo – black (.JPG)
World Sanfilippo Awareness Day logo – black (.PNG)

World Sanfilippo Awareness Day logo – white (.PNG)


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.  Helping spread awareness.

A “World Sanfilippo Awareness Day” Facebook frame has been created and below is an EXAMPLE of how it will display when people add it to their profile image.

World Sanfilippo Awareness Day - Facebook Frame Example

You can use a frame already available on Facebook, or you can upload your own.  How to upload a frame for your friends and followers to find and use:

  1. Download the World Sanfilippo Awareness Day Facebook frame image to your device.
    DOWNLOAD THE FRAME: World Sanfilippo Awareness Day Facebook Frame (.PNG)
  2. Go to Facebook’s Frame Studio. and follow the steps to submit it for approval.
  3. 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 children partnered with your organization or lab and post it on social.

DOWNLOAD THE OVERLAY:
World Sanfilippo Awareness Day – Facebook Image Overlay (.PNG)

These are EXAMPLES of how the overlay looks when added to a personal photo.
**** with all posts, remember to type the hashtag #WorldSanfilippoDay 

Graphic for World Sanfilippo Awareness Day  Graphic for World Sanfilippo Awareness Day  Graphic for World Sanfilippo Awareness Day

To make your own, download the overlay and use your favorite photo editing tool to layer it over your favorite picture. 

Cure Sanfilippo Foundation

501c3 non-profit
(Tax ID: 46-4322131)

curesff@gmail.com

P.O. Box 6901
Columbia, SC 29260

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