A couple months ago, when I was researching Asher's Chromosome 13q Deletion, I was fortunate to come across two websites dedicated to supporting families dealing with Rare Chromosome Disorders - Unique (for UK families) and chromodisorder.org (based in Florida). It was on these websites that I learned about Rare Chromosome Disorder Awareness Week #RCDA from June 7-13. Almost immediately we started to talk about how to be part of that week and share about Asher. We eventually came up with #Active4Asher, we wanted to encourage others to be active during that week to support Asher and others who cannot walk, run, jump, etc. due to a chromosome disorder.
What transpired the week leading up to June 13th and on June 13th was above and beyond our biggest hope for the event. We knew that we wanted it to be annual. We knew we wanted to encourage friends near and far to join in either in person or remotely. We hoped that maybe 20-25 people would jump on board. Well, we met that number and so much more. A huge thank you goes out to Carlee Padot McClurg at carleemcdot.com for offering to promote our little event and really getting that social media aspect going and to @Chrismalenab for taking promotion to new levels. The video he made still makes me tear up when I see it.
On June 13th, we had over 30 people come through William B. Pond on the American River Trail to say hi to Asher, learn a little more and put in a few miles. @Pavementrunner even came from the Bay Area to support our family! Once we were home, we were overwhelmed by Instagram posts tagging @fitfam6, people using #Active4Asher and the sheer number of tweets kept us up until 1am! We tried our very best to respond in some way to each post and tweet. Take a look below at some of the photos from the day.
Our biggest fear with sharing about Asher was people feeling "sorry" for him. It was so uplifting to see faces looking back at us as we told a little bit of his story with messages of acceptance, understanding and support. And public speaking is not my thing. Goal for Saturday: do not cry. Almost did, but didn't. Whew!
Seeing so many little ones come out hit the trail and support Asher was beautiful. We wanted to spread awareness about Rare Chromosome Disorders, but we also wanted to send the message of teaching acceptance of each other, especially with the children.
As this weekend comes to an end, we want to say thank you to everyone for showing us love over the past week and especially this weekend. We cannot even begin to describe how grateful and humbled we are by everyone getting out there and being active. Even more, we were able to witness family and friends accept Asher's differences with open arms, to learn about his challenges but only show encouragement and optimism for his development. Seeing and feeling that outpouring of support emphasized to us how blessed we are to have each of you in our lives. Runners truly make the BEST friends.
*We want to say thank you to all the companies that donated to our giveaways: Runfargear, PavementRunner, Resqueeze, Puravida Bracelets, and Happy Family Brands. As a reminder, our online giveaway winner will be announced on Asher's 2nd birthday - Thursday, June 18th.