World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.
The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. On this day, various activities take place in the United States, Europe, Russia, Japan and elsewhere around the world.
In our very own town, we will be kicking off the week with a Rare Disease Rock Concert at North Barrington School. Please join other families for dancing, snacks & fun this Friday night from 7- 9 PM in the NBS gym. Our very own COLTS (Community Outreach Lives Through Students) committee is sponsoring this event which is free of charge, but suggested donations will go to Hope 4 Bridget Foundation and other rare disease outlets. You don’t want to miss our featured band, Better With Bacon! Come and support rare disease!
Growing Cents of Style Sale coming THIS weekend! Come shop the sale and look for the HOT PINK tags! All purchases are 100% donated to the Bridget Kennicott Special Needs Trust, which helps pay for uncovered medical equipment and care for Bridget. Visit the Tree Time Christmas Classics building 22N102 Pepper Road Lake
Barrington, IL \ One black North of Route 14, behind Pasquesi’s For more information, please visit the web site or email Jenny Welsh at www.growingcentsofstyle.com firstname.lastname@example.org www.growingcentsofstyle.com email@example.com
Four special children are battling Late Infantile Batten disease in the Chicago land area. Noah (10), Bridget (9), Ethan (9), and Laine (8) all suffer from this horrific childhood disease where once they ran, laughed and played. Now they are wheelchair bound, tube fed and uncommunicative. At this time, Batten disease is always fatal- there is no treatment. There is no cure.
If only there were more hours in the day, or a fifth season in the year, we would have more time to find a cure for Batten disease. And we would have more time for each of these special children to experience a childhood before Batten disease ruthlessly rips it away. It is time to find a cure.
Hope 4 Bridget, Noah’s Hope and Cures Within Reach are hosting our 4th Annual Benefit to fund research on behalf of all four children, called “A Fifth Season…..Brightening the landscape of Batten Disease.”
A casual gala for a serious cause, which will be held on Saturday, November 15, 2014 at 5:30pm at the Cotillion Banquets in Palatine, Illinois.
The Fifth Season fundraiser will provide a big benefit experience with a relaxed atmosphere, featuring fantastic live music, special appearances/amazing emcees, impressive live and silent auction, dinner, dessert, and open bar.
Please join us for a remarkable evening of friendship, love and hope. We will always have hope for a cure….we will always have hope for Bridget!
Click here to order your tickets!