BENEFITING: Cornelia de Lange Syndrome Foundation, Inc.
ORGANIZER: Cornelia de Lange Syndrome Foundation, Inc.
EVENT DATE: Nov 03, 2013
We would like to start out by sharing with you the story of Frankie and his rare condition: CdLS. Frankie entered this world twenty years ago, eight weeks premature weighing a mere 2 1/2 pounds. Frankie is physically and cognitively affected by CdLS. Although at birth we were not given much hope nor information on this Syndrome we are so thankful that our family has had the ability to reach out to the Cornelia De Lange Syndrome Foundation, for not only answers but a sense of optimism.
Frankie is not yet walking independently and continues to require assistance with all aspects of daily living; however, each time we see him, he inspires us to push ourselves a little harder and a little further than we would normally.
Frankie is a thriving young man who has made enormous progress over the years.
We are asking that you help us give back to the Foundation and help us raise money to provide the essential resources and support to other families and providers who are impacted by CdLS.
We hope that each and everyone of you has the opportunity to help us out.
Thank you for visiting our fundraising page!
Thank you in advance for your support, and do not forget to forward this link to anyone who you think might want to donate too. (http://www.crowdrise.com/clsfoundationnyc2013/fundraiser/susansydneyleone)
Susan, Sydney & Frankie Leone