Dear Rett syndrome community,

IRSF would like to extend our deepest gratitude to each and every one of you who took action throughout our 2012 October Rett Syndrome Awareness Month. Our month only becomes meaningful when each of us makes an effort, and you really did! Thank you for your unwavering support of the International Rett Syndrome Foundation each and every day, and especially for your incredible efforts during October Awareness month. Just by spreading our message, you helped us reach more people than we ever thought possible in October! Because of you, awareness and funds were raised around the world for Rett syndrome throughout October.

Here are just a few notable examples of the many ways that you helped spread awareness during our month:

You contacted radio and TV stations across the U.S. to request that they play the Rett Syndrome PSA. There is no reason why to stop now! Please continue to request airplay in your communities continue beyond October! We especially thank our Family Advisory Board for taking on this special initiative. Thanks to you, new families are connecting with IRSF, and diagnoses are being made!

We thank Jennifer Larimore, PhD, Agnes Scott College and IRSF funded investigator for her excellent educational webinar, "From Mind to Molecules: Neurobiology of RTT" on October 23rd. Freshly returning from the annual Society for Neurosciences meeting, she brought us the latest understandings about the human brain. Fact: did you know that in 2 minutes, your brain consumes more energy than your legs need to run a marathon? Nourish those brains of our children with Rett syndrome! They are working hard each and every day! Registrations far exceeded available seats, and for those who missed the informative webinar, you may simply click on this link and you will be able to listen along as well as view the slides.

We kicked off the month with the incredible $300,000 matching challenge grant put forth from two special donors: Judi Rees, an amazing grandmother in our community, and the Rachel Ames Rohr Foundation. We will be able to share the progress towards this challenge soon! More importantly, over 25 incredible events hosted by families and supporters of IRSF raised spirits and critical funds in October, including the signature IRSF Strollathons held in Georgia, Central Florida, Portland, Minnesota, New Jersey, Northern California, Texas, Southern California, Grand Rapids, and Fairfax; Oakley Jae’s Family Fun Day for Rett Syndrome; Reeling it in for Rett Fishing Tournament; Spending Time Ending Rett Concert; Course for a Cure; Tee it Up for Rett Golf Tournament; Evening with Angels Gala; and finally the Black Out Rett Syndrome Concert, with our own IRSF Research to Reality Chair and country-music sensation Clint Black. These events represent a LOT of amazing activity from coast to coast, and we thank every Event Chair for their commitment to our shared cause.

• Two Natural History Studies, Oakland and Chicago, begin the build-out of a NHS biobank.


• "From Mind to Molecules: Neurology of RTT" open webinar.


• 13 Governor Proclamations obtained declaring October Rett Syndrome Awareness Month.


• Blue Sky Girls events on Oct 13th at over 20 sites across the country as well as in 6 other countries.


• Ohio Rett Symposium


• RTT facts and highlights shared daily across social media channels helped us reach 26,494 individuals on Facebook alone!


• Here are a few news stories that YOU made possible to help teach the world about Rett syndrome:
  
  
  • Thank you Linda Favaloro for teaching the world about Lauren.
  
  
  • Thank you Jessica McGuigan for teaching the world about Maggie!
  
  
  • Thank you Federico Rabe, California, for teaching the Spanish-speaking world about Valentina!
  
  
  • Thank you Shannon Stoiber from Kansas for teaching the world about Alyssa!
  
  
  • Thank you Kelly Hooper and family in Louisiana for teaching the world about Riley.
  
  
  • Siblings do their part too! Thank you David Larson for allowing Bailey to raise awareness about her much-loved sister Emma!
  
  
  • Thank you Ashley Alexander in Georgia for teaching the world about Lillie!
  
  
  • Thank you Nicole Pintoski & Jeramie Curtis and Nicole Mast in Michigan for teaching the world about Natalie and Makayla!
  
  
  • Thank you Lori Johnson and Evie Lynn Swann in Nevada for teaching the world about Camilla and Annie!

These accomplishments were achieved through the hard work, dedication and commitment of countless volunteers. Congratulations and thank you! Build on these successes year-round, and start thinking now about how you can get involved next year. Let’s keep it up. We promise that we will. We know that living with Rett syndrome is hard, raising awareness about someone you love is not.

IRSF would also like to wish everyone affected by Hurricane Sandy a speedy recovery and a swift return to normalcy. You are in our thoughts.

Stephen Bajardi
Executive Director
IRSF