By: Shelia Hernandez-Hale, PRISMS Regional Representative Puerto Rico
On Smith-Magenis Awareness Day on November 17th, Shelia Hernandez-Hale, PRISMS Regional Representative for Puerto Rico, engaged in various activities to spread awareness of Smith-Magenis syndrome in her community in Puerto Rico.
On the Smith-Magenis Syndrome Puerto Rico social media (Facebook & Instagram) we published posts about Smith-Magenis syndrome facts for a total of 18 days on our page. Through our Facebook page, we have identified six families in Puerto Rico. I have given them PRISMS information and encouraged them to join the SMS community. We have a WhatsApp chat in which we support each other and exchange medical and educational information. We are planning to meet next year in 2024.
I shared the link to the PRISMS SMS Awareness Day t-shirts, and some teachers and Joaquin’s friends bought the shirt; however, for those who couldn’t buy it, the teacher prepared a mold with a Cricut Machine maker and they designed different molds. The entire school community and all 72 students from the school painted on a white t-shirt a heart and a message in support. They used this shirt on Friday, November 17, the day that coincided with the turkey race (Thanksgiving) at school. That day seeing students, teachers, assistants, therapists, and some parents… the entire school community wearing the shirts was simply… amazing.
The school also sent a communication to staff and parents about SMS. In the classroom, the teacher spoke to the students about SMS. The students colored SMS coloring pages and also completed a word search. At the school lobby, I prepared an informative table with the promotional material received from PRISMS. The brochures were delivered to Joaco’s shadow assistant, teachers, and therapists. In addition, Joaco’s teacher prepared an SMS Awareness Day video and the school shared it on their Facebook page, you can see it here.
My sister, Joaquin’s aunt, Dr. Omayra Hernandez-Vale, presented a PowerPoint presentation webinar on SMS for the students of the University of Puerto Rico Aguadilla campus. She was the main speaker and as part of her presentation, she explained in detail what SMS is in the genetic context, medical treatments, behavior, and emphasized the research and awareness to the genetics students. At the end of the presentation, she talked about Joaquín, which was her sole motivation so the students could get to know someone with Smith-Magenis syndrome.
As a mother of a child with SMS, I feel committed to being able to contribute and help other families. They have my support as a representative of PRISMS.
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