Kids come together to learn about rare disease, and how easy it is to help!
St. Edward the Confessor Catholic School in Southern California was the site of a 50 person ribbon making event that took place on campus after school, as one of many awareness activities taking place throughout the country in support of World Rare Disease Day!
Glue Dot Ribbon Making Kits were brought into the school and the kids were put into teams of 5 to make blue denim ribbons, the unifying symbol of hope for the rare disease community. For many of these children it was the first time that they had really heard about ‘rare disease’. However, once they had an opportunity to ask questions, share stories, it became clear that the majority of those participating all did know someone affected by a rare disease or disorder.
These types of activities make it very easy to help educate kids in a few ways: first, we have the opportunity to teach them about some of the stats and facts related to this very large community and what their needs are, we can introduce them to some families through storytelling. In some cases, these kids have an opportunity to even meet families and their children that are affected by rare disease.
Second, through partnerships with 23andMe and ‘JeansforGenes’ in the UK, we have the opportunity to share some educational videos about genetics and ‘genes’ in an age appropriate and fun way. These videos have been very effective and are a great resource that have been made available to anyone who needs them. https://www.globalgenesproject.org/videos.php Last, with Global Genes, one of the goals was to help build a platform that would make it easy for the general public to get involved and make a difference. Through these types of programs, we are helping teach kids how easy it is to ‘give back’. And that is one of the most rewarding things of all.
Over 2600 ribbons were made in little over an hour! In addition, each group of 5 had the opportunity to watch an educational video and ask questions about the campaign, the families and rare disease in general.
A HUGE thank you to the kids, administrators and parents of St. Edward the Confessor School. We are grateful for your continued support of this community and cause!
For those of you reading this blog, you too can create these types of events in your community. It’s easy. These types of in-service programs can be planned all year long, and many resources will be made available to you from all of us at Global Genes Project. Let us know how we can help!