BENEFITING: Rett Syndrome Research Trust
EVENT DATE: Oct 20, 2013
In November 2010 I ran my first marathon, NYC, and raised $4,201.00 for Rett Syndrome Research Trust in honor of Eva Fini. Eva is now a beautiful seven year old girl, still fighting, with her family, for a cure for Rett Syndrome. In preparing to run my 2nd marathon, the inaugural Hambletonian Marathon on October 20, 2013 in Goshen, NY, I have decided to join forces with Team Eva to once again raise as much as I can to help find a cure for Rett Syndrome.
Eva is the youngest daughter of Aimee and Al Fini who are working tirelessly to raise funds to find a cure for the disease for Eva and all girls who suffer from this illness. No matter how many hours I put into my training each week, the amount pales in comparison to both Al and Aimee's efforts as well as Eva's hours of hard work with a variety of therapists.
Rett Syndrome, besides being the most physically disabling disorder on the autism spectrum, mainly strikes little girls soon after they have learned to walk and speak. As a blessed mom of five, three of them healthy girls who definitely know how to speak, I feel compelled to help Aimee and Al to raise as much as possible so that Eva can grow up healthy and happy like my three girls and her four older sisters. Rett Syndrome continues to be sadly under-funded, and young girls like Eva who are diagnosed with Rett Syndrome require 24-hour care and will continue to require that until a cure is found. Please take 6 minutes (and 39 seconds) from your busy schedule to watch the beautiful video below that Aimee made. And, with Al's permission, I quote a letter that he wrote to Eva that was printed in a journal for a fundraiser held earlier this summer. Al writes:
"Eva, my littlest 'chick' ....Every day I watch you try your hardest; you inspire me, and when I see you struggle, it saddens me. But at the end of each and everyday my little girl, it is you who motivates me to press on for a better tomorrow, and for that I am blessed....." "Don't let your heart be troubled my sweet angel. With hope and prayers we'll figure this thing out; It's not a matter of IF, it's a matter of WHEN."
Please help make WHEN happen NOW.
To learn more about Eva and Rett Syndrome, go to www.EVAfinifund.org or www.rsrt.com. Feel free to forward this to anyone and everyone that you can!
Thank you in advance for any help/support/dollars/prayers you can give - every little bit helps!