Whether your child is school aged or beyond, there are ways to spread awareness to their community and peers about PURA Syndrome! Here are some ideas and some language to get you started:
Awareness Card
We have a parent willing to edit the template for parents and email them the customized card file within 48 hours. Parents, fill out this Google Form with what you would like written on the cards. See below for the example of one for children (blue) and one for parents (green).
Other Awareness Card example 1 (postcard sized or larger):
Front: Photo of PURA Perfect Individual
Back:
Hi friends!
PURA Syndrome Awareness Day is coming up soon and I wanted to share some information about me. I have PURA Syndrome and it’s very rare. It was discovered by doctors in 2014 and there are only around 700 kids diagnosed around the world, living in 60 different countries. I am the only one in (enter location here if you are the only one in your area)!
You may notice that I use a gait trainer and walker to help me walk and I don’t talk using words yet but I work really hard in my therapies every week. My favorite part of the day is seeing all of you throughout the building and I just love watching all of you run and laugh. You encourage me to be social and I love it when you say hello to me!
Thank you for being so kind, my family is really grateful that I am at a place with such wonderful students, teachers and staff.
Love,
XXX
Too learn more about PURA Syndrome, please go to www.purasyndrome.org.
Other Awareness Card example 2 (postcard sized or larger):
Front: Photo of PURA Perfect Individual
Back: Discovered in 2014, PURA Syndrome is caused by a genetic alteration in the PURA gene which provides instructions for making a protein called Pur-alpha (PURA), which is expressed in all tissues of your body. (Insert name here) is one of 700 known cases in the entire world. (Insert name here) is non-verbal, unable to walk independently (but can walk all over with the assistance of a walker or by holding someone’s hand) and is the happiest person you will ever meet! To learn more about PURA Syndrome, please go to www.purasyndrome.org and look up the hasthtag #PURAperfect on Facebook and Instagram.
Awareness Giftbags
These can be whatever you would like however here’s some ideas of things to include to get you started:
- PURA Awareness Card
- Small snack item (goldfish crackers, graham crackers, etc.)
- Depending on age, class size and cost, a small beanie baby of your child’s favorite animal or small toy
- PURA Syndrome Wristbands (https://24hourwristbands.com or Amazon)
- Sensory toys, i.e. pop tubes, monkey noodles