Make Like A Zebra and #ShowYourStripes

Every year, my daughters and I look forward to Rare Diseases Day. It is such a great opportunity to raise awareness, but I feel like it also is a wonderful reminder to them that they are not alone– there are kids all over the world with whom they share this common “Rare” thread.

My youngest daughter approached me a few weeks ago and asked how she could help to raise awareness at school this year. I was touched that she wanted to get involved, especially after she told me that she had been letting all of her teachers know that “Rare Day” was fast approaching.

I was excited to find ways to help her to raise awareness, but found making the information 6-year-old appropriate to be a bit tricky. But once I started digging around for resources, I was happy to find some great ideas! I wanted to share them with all of you here, since many of you have young children as well.

  1. Global Genes always has such great resources, and for kids, they had some wonderful printables that are very kid friendly. At this link, I found printable cards and classroom activities that were appropriate for elementary age kids.
  2. This article, also courtesy of Global Genes, was full of great information on how to get kids of all ages involved in Rare Disease Day activities in a school setting.
  3. Though some of the links in this 2014 article are no longer active, this article still gives some great suggestions for activities that bring Rare Disease Awareness into the classroom. I love the idea that uses beads– check it out!
  4. NORD (the National Organization for Rare Disorders) is a great site to visit year-round for a multitude of resources, and their well-organized, thorough Rare Disease Day resources do not disappoint! Visit this page and click on the arrows at the “Download Materials” tab for some great resources. Be sure to read through all of the downloads that are there when determining what is appropriate for the kids or for the setting in which you are hoping to spread awareness. The coloring sheets are great for young kids and the word search would be appropriate for middle grades and upper elementary. Don’t forget to check out their recent blog post, “10 Ways to Show Your Stripes This Rare Disease Day!
  5. As always, we have great resources to learn more specifically about FPIES at our Foundation’s website. Be sure to visit the Kids’ Corner for some kid-friendly reading, videos, and printables. There are also some blog posts from years past that give suggestions on how to get involved in raising awareness on Rare Diseases Day!

What are my kids and I doing this year? The girls will embrace this year’s theme of “Show Your Stripes” and wear zebra print outfits in honor of the day. They will bring zebra print stickers and zebra print awareness ribbons (I found the spools of ribbon at my local craft store!) to school and have asked that I send in materials for their classroom teachers. We will reach out on social media to show our support and as a family, we will commemorate what it means to be our own tiny herd of zebras, as all four of us have at least one rare diagnosis each. (There will also be safe cupcakes baked in zebra print wrappers.) And as we do each year, we will continue to remind one another the words of NORD— “Alone we are Rare, Together we are STRONG.”

Keep us posted on your own involvement in this special day and be sure to share your pictures on social media! Make like a zebra and #ShowYourStripes!

This post was written by Amanda LeFew, Co-Director and founding member of The FPIES Foundation. T