We are fortunate to know so many of you will, too. Because it's Batten Disease Awareness Weekend, we ask that you consider telling someone Celia's story. Also, please consider participating in any of the following fundraisers:
June 12 -- until then, order jewelry from CaleCamo and 20-25% of your purchase will go to BDSRA for research.
*To read about promising research that has finally reached clinical trials and has been funded partly by BDSRA, go here.
Indefinitely -- order the Sweet Celia headband from Maya's Curls, and thirty percent of the sale will benefit BDSRA.
Indefinitely -- order Celia's Cardthartic card and profits will go toward infantile Batten research.
through mid-July -- follow Noah Coughlan as he continues to run across the country promoting awareness. Pledge per mile this weekend, if you can.
July 30, 2011 -- walk or run in the Heart of Ohio 5K/10K/1M event in downtown Columbus. HoO promotes numerous Ohio-based non-profits and BDSRA has been invited to participate this summer.
October 15, 2011 -- bring your pooch to the 2nd annual Barkin' for Batten Dog Walk at Hannah Park in Gahanna at 11:00 am.
November 2011 -- join us for the 3rd annual OSU MICU's Walk for Celia at Antrim Park, near Worthington. Exact date and time to be determined.
Thank you for helping us extend the reach of recognition for this disease. We know that love and compassion motivate your sacrifice. And really, whether it's a sacrifice of time or money, many of you have given so much on behalf of our daughter. Know that through your giving we hear echoes of hope.
JEB
Edited to add: ABC6 plans to run Celia's Hospice piece tonight at 5pm.
Many thanks to Brooke, Luke, Noah, Molly + all the kids who have been so very kind to Celie and Tuck -- and to their amazing parents!
ReplyDeleteI found your site through Elastamom :)
ReplyDeleteWe have a friend who's son has Batten's Disease. He's in his 20's now and plays in a rock band, SUPERFIRE (http://superfire.ca/)
I'm so glad that you're bringing more awareness to Batten's Disease!!