Holoprosencephaly Awareness Week 2023

It’s almost time for Holoprosencephaly Awareness Week, and we hope you will join Families for HoPE and HPE families around the globe in this awareness raising campaign.  The week will kick off on Saturday, March 25 and run through Friday, March 31!

We have selected “Songs” as the theme for this year’s awareness week, and we have suggested activities and prompts to help you celebrate the week (see below).  Use these activities and prompts to open doors to conversations with family, friends, co-workers, neighbors, classmates and even with strangers.

Photo of Regina Cannon standing behind a table displaying information for holoprosencephaly awareness weekHere’s one example from last year.  HPE mom Regina Cannon raised awareness in her community through a display at her local library. Regina asked permission to set up a table where she could share information about holoprosencephaly while also sharing stories from a book she authored about her daughter, Myracle, who had been born with HPE. Regina spent an entire day at the library telling her story of HoPE and educating library visitors.

Do you have a circle of friends, followers or subscribers on social media?  Download digital materials here that can be shared on your social media accounts. Also, share photos and videos, and include stories about your HoPE journey.

Here are a few ideas to let your creativity show:

  • Maybe you’ll go viral with your own HoPE dance on TikTok.
  • Create a video of your family lip synching to a song.
  • Challenge your friends to an activity.  Remember the Ice Bucket Challenge? That initiative started by 2 individuals with ALS became a viral sensation and brought world-wide attention to ALS.  That attention yielded donations which dramatically accelerated the fight against ALS.
  • Attending a sporting event during Awareness Week, like the NCAA tourney or a NASCAR race?  Or planning a trip to NYC and can catch the Today Show outdoor segments?  Or a Harry Styles concert?  Make a sign about HoPE and try to get it on tv or seen by a large group of people.
  • Pick up a dozen doughnuts from Krispy Kreme or a Party Pack from Taco Bell and share them with 11 other people in honor of someone you know or love with HPE.  (You must save one for yourself, of course!)
  • Need help with an idea that you have?  Send us a message at info@familiesforhope.org, and let us know what you need.

Please enjoy this special week designated to share your HoPE, and without a doubt, you will teach and inspire others in ways you never imagined!