Last year we hosted our very first 'Ella's Run' 5K Fundraiser. We were so overwhelmed with support and had such a good time.. that we've decided to make it an annual event!!
This year we are planning the 2nd Annual Ella's Run for Saturday May 9th,
which coincidentally also happens to be CdLS Awareness Day. :)
Our main goal with Ella's Run is to raise awareness (aka: acceptance) of CdLS-hence the correspondence with CdlS Awareness Day- and to teach others about what CdLS is and how it affects people. The more people that know and are talking about CdLS the less awkward and isolating it becomes to families dealing with it personally.
The second goal is to raise money for future CdLS Conferences-the next one being in Orlando, FL in 2016. We have had such amazing experiences at Conferences and we want to try to attend as many as possible, especially while Ella is young. We don't know what the future holds and the possibility that travel will only get more difficult as the years progress (remind me of this as I try to board an airplane with 5 small children in tow next summer..) weighs on our minds. Conferences are the absolute best place (and only really..) to be able to receive head-to-toe consultations with experts from a range of medical and educational fields, attend workshops, and connect with other families facing similar challenges. We miss seeing our CdLS family so much.. We can't wait until next summer!!
And we are very excited about our last goal-to be able to donate a portion of our proceeds back to the CdLS Foundation! The Foundation has been so good to us-from day 1 of Ella's diagnosis when our geneticist pointed out a horrid black and white picture from an outdated medical journal and told us that's what Ella had, then promptly closed it and directed us to the CdLS Foundation's website instead where pictures of kids playing and laughing popped out at us. From sending us information, answering questions, directing us to the right doctors, to always knowing our name when we call and making us feel like we're old friends. And plus.. they have a giant poster of Ella hanging in their office.. so there's that. ;)
If you want more information on the 5K (and NO you don't have to run it) you can search Ella's Run on Facebook and join the group where you'll find registration forms. If you want to guarantee a t-shirt for the run (or just order a t-shirt!) you need to get your registration in by May 1, which is NEXT WEEK!! You can also email or message me and I can get you added to the list.
We are really excited about Ella's Run and it would mean so much to us to have a great group of people show up to support CdLS Awareness and have a lot of fun!