Be the voice of a child, of Rett syndrome, of IRSF

Dear Rett syndrome community,

In the final weeks of Black Out Rett Syndrome in October month, we at IRSF would like to thank you for your amazing efforts thus far! We would like to extend a special thanks to all of the Strollathon Chairs for their hard work in raising funds and awareness while uniting the community. We would also like to send best wishes to Henry Perez this weekend at the Florida Strollathon, to Michelle Sholder at the Evening with Angels, Ghosts and Goblins event in Harrisburg, PA, to Christian McMahan with the Virtual Toast Fundraiser and finally to Kathryn Kissam, Chair of the Board, this weekend at the Black Out Rett Syndrome Concert in Baton Rouge, LA. Because of you, our Board members, volunteers, representatives and our entire community, we have taken strides in our mission to accelerate research, raise awareness and funds all while supporting each and every one of our families. Your continued volunteerism and commitment extends our reach, strengthens our support net, and creates a bonded, unified Rett syndrome community. This is a priceless gift to give to the thousands who could be left adrift with nowhere to turn, without hope on the horizon, raising a child misunderstood by many. We are grateful for your gifts that help us push research forward towards new treatments for the future. Today, we would like to make you aware of a few immediate research-related events happening that may be of interest to you.

  TUESDAY – October 23rd! "From Mind to Molecules: Neurobiology of RTT" with
     Dr. Jennifer Larimore

     IRSF is hosting an educational webinar: "From Mind to Molecules: Neurobiology of RTT" presented
     by Jennifer Larimore, PhD of Agnes Scott College in Atlanta, GA.

     Dr. Larimore is an IRSF funded investigator and presented at the Educational and Awareness
     Conference at the 7th World Rett Syndrome Congress. If you missed her presentation, we urge you
     to register now and participate in today’s webinar.

     The presentation will be held from 1:00 PM EDT - 2:30 PM EDT.

     Get Registered to Attend NOW!

  This weekend – October 27-28! "Natural History Study – Chicago, IL"

     Rush University Medical Center
     Chicago, IL
     Please contact Marie Kral for more details at kraldg@sbcglobal.net.

  Related Commentary: "The Natural History Study in Oakland, CA and Building the
     DNA Repository for Rett syndrome" - Contributed by Dr. Jeffrey Neul, Baylor College of
     Medicine and the Duncan Neurological Research Institute at Texas Children’s

     The blood collection in Oakland went extremely well with 40 participating families totaling 108
     samples. Thank you to everyone who participated and the entire Oakland team for making it happen.
     We are working out details to have blood draws occur at the monthly Katie's Rett clinic at Children's
     Hospital Oakland.

     Similar blood draws in Chicago are also in the works; we are awaiting approval from Rush's Internal
     Review Board. Nonetheless, anyone who will be attending that site visit and is interested in
     participating in the blood sample collection should contact the research coordinator, Amber Pearce,
     at 832-822-1790, to register interest and obtain consent at this time.

     Read More...

Our inspiration comes from our children: their questioning eyes that look right into our souls; those smiling faces that beam with appreciation for the smallest joys we take for granted – a drink when thirsty, a walk when restless, a dance or wiggle when moved by music or a favorite show, the light of success when a new skill is mastered, however awkwardly or inconsistently; their inner strength and tenacity to make it through countless therapy sessions, doctors' appointments, and IEP assessments, all of our makings, not theirs! And our inspiration comes from you. Your ability to balance life demands, work responsibilities, and still find the energy and initiative to support IRSF is beyond heroic. Because you raise your hand to be the face and the voice of your child, of Rett syndrome and of IRSF, we remain the largest private foundation to accelerate research and support families. People turn to IRSF because they trust we will have the answers. Because of you, more and more people are seeing the true abilities of our girls, and they want to help. We are making a difference!

Our month is not over! We invite you to further your efforts throughout October to push full steam ahead to raise crucial awareness, host events, hold online fundraisers and so much more so that we might find the needed treatments and an eventual cure for all of our angels with Rett syndrome.

Donate to the Black Out Rett in October Campaign and potentially have your gift matched up to $300K!

Change your profile picture to the Black Out Logo.

Share the IRSF Facebook posts every day in October.

Get a proclamation announcing October as Rett Syndrome Awareness Month in your state!

Send an email to all friends and family asking them to support our fight.

Thank you,

The Board and Staff
of the International Rett Syndrome Foundation