For Rare Disease Day, Latham students “show their stripes”
February 28, 2019
When PWSA (USA) invited Latham to join their project for Rare Disease Day 2019 entitled “Show Your Stripes,” students happily participated. Not surprisingly, they demonstrated that we have many heroes among us! Students were asked to choose their “Prader-Willi syndrome hero,” and their responses included Children’s Program staff, parents, and friends. Students involved in this fun project were given a whiteboard and asked, “Who is your PWS hero and why?” They shared their responses in a zebra-themed photo shoot. If the staff member or person mentioned by the student was on campus during the project, they were invited to pose with the student in the photo. Here are some of the responses:
“My PWS hero is [my clinician] Patrice Carroll because she helps me when I am upset.”
“My PWS hero is my friend Daniel. Daniel is a great friend because he has been supportive of me from the minute I met him. When I first came to Latham Centers he helped me through the transition. I couldn’t describe all the ways he has helped me on one board!”
“My PWS hero is [Latham staff] Adam because he is always supportive and fun to hang out with, and he is nice and sweet.”
“My PWS hero is my best friend Patrick because he is supportive, and also my clinicians Judy and Patrice because they helped me and Patrick with our friendship.”
“My PWS heroes are [my friends] Reilly and Daniel. They help me with my peers.”
“My PWS hero is my clinician Patrice. She helps me with my friendships and who to be friends with.”
Special thanks to PWSA (USA) for the opportunity to take part in “Show Your Stripes” – the students and staff had a great time with this project! At Latham, we are focused on PWS not only on Rare Disease Day – but every day. Latham Centers is internationally renowned for its expertise in working with individuals with PWS, and this project was the perfect opportunity to express appreciation to some special heroes.
Rare Disease Day: An observance held annually on the last day of February to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
PWSA (USA)’s Show Your Stripes project: “The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States. While each of the more than 7,000 rare diseases is unique, there are many commonalities that unite our community. To raise awareness around rare disease issues, NORD is promoting specific ways that individuals, organizations and groups can show their stripes in support of Rare Disease Day!” Every day this week, PWSA (USA) highlighted a PWS “Hope Hero” – individuals either living and thriving with PWS, or someone making a real and meaningful difference in the PWS community. Today, PWSA (USA) highlighted “some very special PWS warriors” – our Latham students – who “took a minute to tell us about their own PWS Hope Heroes!”