Disney Princess 2019 is in the books, and our 2019 themes, #RiseAboveRett and #HopeInAction, were prominently on display at this year’s run! What an encouraging and motivating week it was, as over 100 runners and GP2C supporters gathered in Orlando to run, raise money and increase awareness in our fight against Rett Syndrome. As I suggested at our annual team dinner, Disney Princess always provides the “fuel” to keep us burning throughout the year… moving forward every day, every week, and every month to better the lives of Rett families while helping us all to #RiseAboveRett.

And the momentum continues as we gear up for the Ragnar So Cal Relay! Team Sparkle is in prime form and will once again dedicate every mile of the 185-mile race to one of our beautiful Rett children. Please make sure to register your favorite Rett girl or boy here for one of the miles, and also consider participating in the Team Sparkle Virtual 5K. What a fantastic way to gather your local supporters and friends to help raise awareness!

On the research front, Novartis-AveXis released a very encouraging announcement in mid-February, indicating a renewed commitment and expansion of their gene therapy manufacturing facilities.  We will continue to monitor these developments as AveXis moves closer to potential clinical trials for AVXS-201.

…the biotech that is developing the treatment says it needs to more than double the size of its new manufacturing operations. AveXis now plans to have 400 employees and invest about $115 million in the North Carolina site. AveXis… announced it will invest another $60 million and hire another 200 workers… “Continued investment in our infrastructure in North Carolina will allow us to manufacture multiple gene therapies simultaneously, helping us reach more patients, faster.” (Andy Stober, Senior VP of Technical Operations)

Other Events:

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 mid-April. Please join us if you are able!

Finally, we continue to move forward with some exciting changes for 2019! Our re-imagined GP2C and RettGirl.org websites are under development, with a goal to deliver dynamic and relevant content to Rett families world-wide. Please reach out to our Family Advocacy and Support team, Jenny Tesler and Carolyn Fowler, with any suggestions you might have for our new platform. You can reach them at support@gp2c.org, or drop them a note on Facebook or Instagram!

Have a great March!

Kevin