So, here we are in Boston. If you haven't been keeping up, go to my blog at (Driving on the highway.) I have come to Boston to attend The Joshua Frase Foundation Muscle Dream Team Gala. It has been an incredible event! Here's what I have learned:
1. The Joshua Frase Foundation has raised millions of dollars for research for Congenital Myopathies (of which Myotubular Myopathy is one!)
2. The other families that I met here (Connie Guinn, Benjamin's mom, Pat and Sarah Foye, Adam's parents, Scott and Betsy Grant, Kyle's parents, Maria Beasley, Logan's mom, Paul and Alison Frase, Joshua's parents, and many others) are fiercely committed to finding a cure for these myopathies.
3. Dr. Alan Beggs (see photo of lab above!) and his group of researchers are incredibly committed to the research they are doing. I have never met a finer group of scientists who are personally invested in finding a cure. Amazing since their interaction with these boys is only through photos, etc. They expressed frustration that science is not moving fast enough for them! Amazing!
4. The response I felt for the Buddy program and the other things I am doing with Javad's Place was incredible and affirming! I believe that the program is going to do great things!
It has been an amazing experience so far! I am already planning for next year, where I will have to suffer through being treated like a queen for a weekend...it's hard having doors opened for you and being called Ms. Guinn all weekend (that's another story all together!) Oh yeah..and sleeing on a cloud-like bed that has been turned down for you! Yep...need maids at home. That's on my new list of to-do!
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