Friday, August 15, 2014

Strolling for a Cure

On September 6th, we will be joining other families in a strollathon, the signature fundraiser of (formerly known as the International Rett Syndrome Foundation) to raise much needed funds for the search for a cure. I have spoken recently about my feelings about a cure and how it simply terrifies me to think about it too long and too hard because my hopes just start to soar. But regardless of my protective coping skills, progress is being made all of the time in the search for ultimately a cure, but also treatments for symptoms. 

In 2007, Rett Syndrome was reversed in mice in a lab. Click on the link below and watch the first two videos on the page. The first is before the reversal, and the second is after. That could be Lucy someday. But isn't everything always about money? Unfortunately it is, and we as a community of parents and loved ones of girls with this miserable condition are often the ones out beating the streets, asking (begging/pleading) for the crucial funds to continue research so that our sweet girls might someday get to live full lives. It costs money to safely translate the success in mice to humans and we just want to help move that along as much as we can. 

There are also several very promising clinical trials taking place throughout the world, testing medications that could change Lucy's life. They also cost a lot of money. I know that money doesn't grow on trees, and that everybody works hard for what they have.  We are just asking that if anybody who can spare anything, ANY amount, would be willing to sponsor us in the strollathon, we would be eternally grateful to you and thankful for your caring and generosity. We just want to see a cure within Lucy's lifetime, and from what we hear, this is a very real possibility, but not without the funds that keep the wheels turning. 

Anybody who is interested is more than welcome to also join our team and help to raise money by getting their own sponsors, and participating in the strollathon with us. The more the merrier!

For anyone else, please feel free to make a donation that is comfortable for you. Again, the Shaffer's and the Rett community will be forever thankful to you!

Please visit the link below to join Team Lucy OR to make your donation:

Team Lucy's Strollathon Page

Here's Lu helping me to prepare a container for some Brussels sprout seeds yesterday afternoon. She always asks to garden. What if someday she could do it without a walker, braces on her legs, and me needing to help her hold all of the tools, and guide her hands for planting the seeds? What if she could do that someday? 

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