That beautiful girl in the poster is Abbi, a fun loving soon to be 9 year old living with cystinosis. April 13th is her birthday and to celebrate for the past few years her school has done Sunglass Day, where kids could wear their sunglasses to school in honour of Abbi for a small donation, with all proceeds going to the Cystinosis Research Foundation.
This year Abbi and her family are taking this event global by challenging everyone to post your sunglass selfie! Participating is super easy, here’s the steps:
1. Put on your favourite shades
2. Snap a selfie
3. Upload to Twitter, Facebook and Instagram with the #cystinosissunglassday2015
4. Donate $5 to the Cystinosis Research Foundation
Abbi is a HUGE Taylor Swift fan and would love to have this challenge make it all the way to Taylor so the more you participate, share and challenge others the more awareness will be spread! Check out this great video of Abbi singing along to Blank Space and also their Facebook page.
We’ve also been doing a little awareness raising ourselves lately. The CRF’s Day of Hope conference is coming up April 16th in Newport Beach and last year Dave and I shared our story with Lars, CRF’s photographer/videographer extraordinaire. Click here to view a little promo he put together from our interview. We’re so sad we can’t be there this year and hope that all the families going have an amazing time!
We also recently did an interview for our local newspaper, the Newsleader, about Elsie and how cystinosis affects us. Our diagnosis story was inaccurate (see the real story here) but the rest of the article is pretty good! Read it here.
And finally I wrote a letter to cystinosis and sent it to the community blog, The Mighty, and they published it! Read it here.