BENEFITING: Cornelia de Lange Syndrome Foundation, Inc.
ORGANIZER: Cornelia de Lange Syndrome Foundation, Inc.
EVENT DATE: Nov 06, 2016
Friends & Family,
On November 6th, I will be running my 5th marathon as part of Team CdLS, in honor of my brother Will and all other individuals living with Cornelia de Lange Syndrome. This year we’re tackling the NYC marathon. My motive as always is to spread awareness of this rare genetic disorder and to raise money for the CdLS Foundation, one step at a time.
Marathon training is demanding physically, mentally, and emotionally. There are times during marathon training when I am 15 or more miles into a run, asking myself, “Why am I putting myself through such an excruciating task?” It is during these moments of pain and exhaustion that I remind myself why I run: For my brother Will. Growing up with a brother with disabilities, I watched Will face many obstacles and medical challenges. With support and information provided by the CdLS Foundation, Will was able to overcome these difficulties. The temporary pain felt from running 26.2 miles is miniscule compared to the pain and difficulties that many children with CdLS feel throughout their lives.
Running marathons is my way to support the CdLS Foundation and all that they do for families like mine, nation-wide. The Foundation provides a host of services that educate and unite families touched by this little-known genetic syndrome. Through a variety of research programs and activities, the CdLS Foundation plays a major role in advancing clinical and basic scientific knowledge about the syndrome which is vital to those living with this incurable disease.
Please help me make this 26.2 mile race a huge success in bringing resources and support to my fellow CdLS families. Any donation is greatly appreciated, no matter how big or small. For those of you who continue to support my brother and I every year, I can’t thank you enough. I am forever grateful to you all!
XO Grace Smisloff