June 2019 – It’s Summer!
Summer is here! We hope this letter finds everyone looking forward to a little break from the hustle and bustle of school days, and hopefully a little rest and relaxation doing your favorite summer things! Granddaughter Blakley and I (and of course Andi Mac and Emmy) were blessed to spend a week on our favorite beach last week… it is certainly one of Blakely’s favorite places to be 😉.
As we get back to work at GP2C, I can’t help but think about the significance of this year for all of our kids with respect to Rett Syndrome drug trials. Our Family Advocacy and Support Team has included a brief reminder of our work with Rettland Foundation (please donate if you can), but I also thought this note from Monica Coenraads at Rett Syndrome Research Trust is a “must-read” for all Rett Syndrome families as we anxiously anticipate the Avexis Rett Syndrome gene therapy trials.
Kourtney Barnum and Susan are doing great work over at Rett University as Kourtney settles in to her new role and continues our tradition of excellence in providing educational solutions and guidance for families with complex-needs children. Check out her newsletter notes on the kickoff for the Summer Book Club and send any questions to email@example.com!
And, as always, we have a full slate of events on the 2019 calendar! Amei has done a fantastic job with preparations for Disney Princess 2020 (yes, it’s that time again). We are roaring out of the gate, with over 120 participants already registered for the various races. DP 2020 is shaping up to be one of our largest most successful events ever, so get your bibs NOW before they sell out, and plan to join us in Orlando next February for all the fun!
We are so thankful for all of our families and sponsors helping to execute the GP2C mission! Be on the lookout for announcements of our upcoming events, including:
- Kendra Scott Gives Back – Friendswood, TX, Baybrook Mall (July 18)
- Move it Move it for Mateah – Evansville, WY (August 17)
- Racing for Rett – Harrisonville, MO (October 12)
- 2nd Annual Rockin’ for Rett – Huntsville, AL (October 17)
- Smash Rett – Tampa, FL (October 20)
Want to help with an event of your own? Amei and Kristi have tons of information and can help from “ideas” all the way through event execution!
Finally, our redesigned GP2C.org website is live! Let us know what you think as we execute our vision to deliver dynamic and relevant content to Rett Syndrome families world-wide. Please reach out to our Family Advocacy and Support team, Jenny Tesler and Carolyn Fowler, with any comments or suggestions for the new site! You can reach them at firstname.lastname@example.org, or drop them a note on Facebook or Instagram!
Have a great June!