March 18, 2016
Sophia's Walk will be March 19th at Woodlake Park in Edgewater Park, NJ, 08010. The park is located at the corners of York and Lafayette. We are asking everyone to please be there by 9:00am as we will begin the walk at 9:30am.
Join us for the 5k benefiting Global Genes and walk, run, or bike with our team for Sophia on Saturday March 19th at 9am. All proceeds from this 5k go directly back to the Rare Disease Community through Global Genes' RARE Patient Impact Grant.
Sophia has been diagnoised with CASK gene mutuation which affects multiple facets of her body. She has microcephaly, a g-tube for feeding, has a cast on her turso for scoliosis, and rocks her glasses and hearing aids daily! We are told at most appointments to "wait and see" because doctors are not sure what to expect reguarding her development and growth. Sophia works very hard with her therapists to continue to grow stronger and to progress developmentally.
If you havent already done so already, join our team for the 5k by registering using the link below. If you cannot make the 5k, you can still be on the team and complete the 5k on your own time, or you can donate towards the cause. On the day of the 5k, we are asking that everyone wear a mask to follow the theme "Don't MASK our fun at Sophia's CASK run!"
I have also attached links for CASK Gene Mutuation and Microcephaly for anyone that would like to educate themselves a little more on Sophia's condition.
Thank you all that have joined, donated, shared, and spread the word. We appreciate it all!
To learn a little about Sophia's conditions, copy and paste into your browser