Hi all! I hope everyone had a wonderful weekend! Our weekend was filled with sore arms from getting our first COVID Vaccine (YAY!), Ice Hockey and Baseball practice and mom and dad were lucky enough to have a date night thanks to Grandma and Grandpa! My last post was about our Advocacy Day with members of Congress, which was such a wonderful experience for us. We made some new, local friends and made great contacts within our Congress member’s offices, which can only be a good thing!
Today, I want to talk to you about another advocacy event we participated in. In a past post I mentioned we were experiencing some issues at school pick-up with Jackson. After having wonderful conversations with the school director we discussed doing a Spirit Week to spread awareness and raise funds for FRAXA. FRAXA’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Treatments for Fragile X are likely to help people affected by autism, Alzheimer’s, and other brain disorders.
Last week, the school held our Spirit Week. Each day the kids and staff could participate by wearing something Green or Fragile X related, we had a School Spirit Day and Pajama Day too! Between online donations, check and cash contributions collected at school we raised $615!
The overall goal isn’t to raise the most money, but to bring awareness to Fragile X and help others better understand Jackson and the daily struggles he endures. While Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities, most people do not know what it is. The reason behind that is most doctors stop at the diagnosis of Autism, but we should be performing genetic testing to see if FXS is the reason for the Autism diagnosis. This is just another area that we need to bring awareness to.
Everyone can be an advocate! Reach out to your children’s school and ask if they would be willing to put on a Spirit Week to bring awareness to a cause near and dear to your heart. You might be surprised in their willingness to support you and your family.
We want to give a big thank you to everyone that helped in this Spirit Week from helping with themed day ideas, donations and spreading awareness, kindness and acceptance. Our family is truly grateful!
XOXO
Our Fragile Xperience 