Holoprosencephaly awareness week is nearing completion, and we hope that you have taken the opportunity to raise awareness of HPE this week. Today, we are celebrating our HPE community and what that community means to us. Please share how Families for HoPE and other HPE families or children with HPE have influenced your journey of HoPE.
Songs can tell a story. On day 3 of Holoprosencephaly Awareness Week, we invite you to be a storyteller. Tell the story of one of the best days ever in the life of your child or family. Tell the story in writing, with photos or give video a try.
In addition to sharing your story with friends and family on your social media accounts, we would love to share your stories with a wider audience, so please send your stories to email@example.com.
To celebrate day 2 of Holoprosencephaly Awareness Week, we are repeating a blog entry from October 2019 when Sarah Brown recorded Colors of the Wind in honor of our HPE community. Enjoy!
Hi! I’m Sarah from Leicester, England. I was diagnosed as an adult, in 2016, with Lobar HPE an Rhombencephalosynapsis. I love to sing and was honoured to be contacted by Leslie from Families for HoPE and asked if I would like to record a song for all of our HoPE children and their loved ones.
I chose Colors of the Wind from Disney’s Pocahontas, mainly because who doesn’t love a Disney song?! I have always loved the lyrics and the message of this song, and Pocahontas is a feisty, headstrong girl who is not afraid to break with convention and defy expectations of those who don’t “look and think like” her. She also talks about all of Earth’s creatures being “connected to each other”, which for me describes the worldwide Families for HoPE community that I have come to be so proud to be a part of. I was really excited to record this beautiful song and am extremely proud and honoured to share it with you. I hope you enjoy it!
In preparation for Holoprosencephaly Awareness Week, we are happy to share a template you can use on social media in coordination with the daily prompts and activities. To access the template, visit one of these links:
Then, simply add your own photos, download and share. (Don’t forget to tag Families for HoPE in your posting so that we can celebrate with you.) And, additional graphics for downloading are available for you here.
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.
Here’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 firstname.lastname@example.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!