Wednesday, August 12, 2015

Why We Stroll

The annual Pennsylvania Strollathon is coming up on September 5th this year! It's being held in Pittsburgh again at the nice park we strolled in last year, while enjoying views of the river. The 2014 event raised over $10,000! I think it would be amazing to do even better this year, but not merely to beat last year's total. You see, in the past year, some extremely exciting announcements have been made regarding progress in treatments for Rett Syndrome. I wanted to share some brief articles explaining the significance of a few of the most promising treatments. There are others. There are people all over the world trying many different things, these three are most recent and provide a lot of hope for the Rett Syndrome community:
New discovery about the X Chromosome
Neuren and Orphan Drug Status

I wanted to share some specifics treatments and advancements so our friends and family, and other supporters could read about how their generous donations are truly being used to someday (soon hopefully) improve Lucy's quality of life. I know for those of you who are not constantly on the edge of your seats, waiting with bated breath, and still trying to not get your hopes up too high, that you may not have much information on the progress toward actual treatments and possibly a cure someday. I hope these articles can give a little insight into what is actually happening, right now within Lucy's lifetime. For all of this amazing research to continue to move forward, funds need to keep coming in to support it. That's just a fact, a bummer, but a fact nonetheless. 

When we first met Dr. Sasha she said that she believes there will be a cure by the time Lu is 10. As much as it scares me to let my hopes get too high, I have made it a rule to always believe Dr. Sasha. So, while most of the time I focus on today, sometimes I let myself imagine what Lu's life could be like without Rett Syndrome dragging her down all the time. 

What if she could pick her own tomatoes, all by herself?

Or walk without anyone's help?

Or what if she could talk with her own beautiful voice? Without special computers or communication books?

With the hopes of those "what-ifs" and a million more that go through my head daily, I find the courage to ask our friends and family to spare any bit they can to help further all of this amazing research. Whether a true cure ever comes, or just treatments that can make a huge difference, I do believe that Lucy will receive some relief from the monster that is Rett Syndrome within her lifetime, and likely within the near future. 

If interested, please click on the link below to support the PA Strollathon and to help give hope to the possibility of Lucy's freedom from Rett Syndrome!  And thank you to everyone, we are forever grateful!

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