Friday, June 10, 2011

IRSF Annual Family Conference

We took a little getaway to Boston the weekend of Memorial Day to attend the 27th Annual Family Conference hosted by the International Rett Syndrome Foundation (IRSF).  I have spent the last week trying to wrap my head around everything that I learned!  

The keynote speaker was Dick Hoyt of Team Hoyt with his motivational message of "Yes You Can".  Dick and his son, Rick, have run over 1,000 races together, including marathons and triathlons.  That in itself is amazing but their story is even more significant because Rick is disabled and in a wheelchair, relying on his father to push him, carry him, pedal him and even pull him in a boat to compete in their races.  They have faced many challenges and have never given up, a truly inspirational story!

We received exciting news about the IGF-1 clinical trial that is currently in Phase 1 at the Children's Hospital in Boston.  The scientists gave a vague update but the general consensus (since it is still in the early stages) is that they are very optimistic about the results!  IGF-1 could have a large impact on the breathing irregularity and digestive issues in Rett children, which would greatly improve their quality of life.  Their is even hope that this drug will also reduce the other symptoms that make life so complicated for our girls!

And if that was  not enough fun and excitement then the communication sessions that I attended that showed numerous videos of how successful our girls can be communicating surely put me over the top!  The first thing that I did when I returned home was send off the order form for Reagan's communication device that I have been procrastinating on submitting for several months.  It should be at our front door in less than three weeks!

Last but not least were the fun times that we had sightseeing around the Boston area, once again seeing the Rett Moms that are my friends that make this journey so much more bearable, and meeting more Rett families that understand what a day in the life is like for us.  It was a great trip and we are already looking forward to attending next years conference, especially since it will be held in my hometown state of LA (New Orleans!).

1 comment:

  1. I am so glad to hear that the conference was such a great experience for you! I love the lightness in your post. It is amazing the transformation I have watched you make over the past year and a half, you are such an amazing, strong person!