February marks my one-year anniversary with GP2C, and with the new year upon us, I cannot be more encouraged! 2018 was a banner year for GP2C, as we enjoyed substantial growth in many of our fundraising and educational programs. And our success is your success, as it enabled one of the most significant contributions to Rett Syndrome research in our GP2C history!
Our theme for 2019 carries forward the idea of hope… Hope in Action! Everything we do for our children is wrapped up in this idea – the idea of moving forward every day, every week, and every month to better the lives of Rett families while helping us all to #RiseAboveRett.
We begin 2019 with great anticipation. Disney Princess 2019 is just around the corner, and I look forward to seeing many of you in Orlando in just a few weeks. We have over 100 runners participating and raising donations to kick-start our 2019 calendar. Team Sparkle and the California Ragnar Relay event return once again this year, and our own Carolyn Fowler (with husband Stephen) will be hosting An Evening of Hope for Rett Syndrome in honor of their daughter Evelyn in the Jacksonville, Florida area in April. We invite you to join us if you are able!
We are all focused on potentially ground-breaking developments in the world of Rett Syndrome research and trials this year. With great anticipation we are watching as our partners at the Rett Syndrome Research Trust move forward with their work in the areas of gene therapy, MECP2 reactivation, RNA editing, and several other promising treatment paths. I invite you to read more about their overall efforts here, and specifically regarding the latest news for AveXis AVXS-201 gene therapy trials here .
We are also planning for some exciting changes in the GP2C community for 2019. Be on the lookout for our re-designed RettGirl.org website coming soon! Our goal is to deliver fresh, dynamic, and meaningful content to Rett families world-wide, and with Jenny Tesler and Carolyn Fowler leading our Family Advocacy team, we are looking forward to some fantastic offerings! Our focus will be on delivering the latest information available on educational tools, products, events, recipes, therapies, family insights and motivational blogs to keep you and your children moving forward, and we look forward to your participation and shared inputs as we fight this battle – together!
As we look forward to 2019 and more exciting research developments, Rett University offerings and caring family support via RettGirl.org, we pray that your family, and especially our Rett girls and boys, remain healthy, happy and hopeful.
Kevin
