Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the unique challenges people face – and it is as important in Forest Park as anywhere across the globe. One of our 2nd-grade students at Betsy Ross is, Giuliana “Gigi” Mason, she has a rare disease and will take part in a global movement for Rare Disease Day, today February 28.
Gigi is a social butterfly who loves school, she is always excited to be with her classmates and learn new things, she also lives with Shwachman-Diamond Syndrome (SDS) an inherited rare disease that impacts the whole body. Gigi’s mother shared with us how important it is for us to continue to bring awareness, she stated “It’s a warming feeling to know that everyone is so committed to making sure she (Gigi) is a part of the community, we were very wary about sending her to school, but we know that she is comfortable and safe at D91” All of the school staff, teachers and aids are very committed to supporting Gigi during her educational journey.
Today, our fabulous educators at Betsy Ross are showing their support and bringing awareness by wearing matching t-shirts to let it be known that we support Rare Disease Day.
According to the National Institutes of Health (NIH), a disease is rare if it affects less than 200,000 people in the United States. Over 25 million Americans live with a rare disease—and nearly half of these patients are children. Of the over 7,000 known rare diseases, 90% are still without FDA-approved treatments. There are a few ways to help, you can donate to organizations that are helping with research and building awareness. You also can contact your congress member to urge them to fund rare disease research. Lastly, you can join us in spreading awareness by letting others know why it's important to care about rare!
Please enjoy these pictures of Gigi, being fully engaged and active as we continue to do our part to ensure that in partnership with home and community, we educate each individual child in a safe and nurturing environment.
