Hey everyone – what an action packed and successful three months since I joined GP2C! We have had a tremendous response from you and your networks as we continue the battle against Rett Syndrome. We completed a spectacular event at Disney Princess, released the spring/summer edition of Rett Girl Magazine, supported our friends from Team Sparkle at the Boston Marathon, and received very encouraging news from Avexis on the recent success/progress of their gene therapy trials!
And regarding the latter, what exciting news to learn of the Novartis acquisition of Avexis! Several have asked my opinion on this, and while I have no intimate knowledge of the details beyond the basic announcement, one can only surmise that acquisition by the fourth largest pharmaceutical company in the world positions the Avexis team very favorably as they proceed with their clinical trial preparation and approvals; not to mention the definitive vote of confidence implied in the technology for gene therapy treatments of SMA, Rett Syndrome, and ALS-SOD1. The acquisition is expected to consummate by mid-year, and assuming successful completion, the funding to support their human trail approvals should be secure!
Finally, I want to thank each and every one of you who took the time to fundraise for us over the last several weeks! At one point we counted over 30 active Facebook Fundraisers in progress (and to those of you who contributed to my Birthday Fundraiser – thanks so much!). Please help us keep the momentum going… Birthday Fundraisers are a fantastic way to reach out to your personal networks, and so simple and quick to establish! If we can help in anyway, please contact me at firstname.lastname@example.org, and we will help get you going. Birthdays for moms, dads, brothers, sisters, aunts, uncles, grandmas and grandpas are all great opportunities to support our tenacious Rett girls and boys, and the research, educational programs and family support mission of GP2C!
It bears repeating, today we have MORE THAN JUST HOPE! But there is still work to do, and we need you, your families and your network of friends and colleagues to help us execute the mission for all of our beautiful girls and boys who fight everyday of their lives!
Kevin, GP2C Director of Development