Rett.com

An infographic guide to Rett syndrome

Rett Dad — Wed, 08 Feb 2012 14:56:58 +0000

Here’s a quick and interesting graphical guide to Rett syndrome from a customer insight and strategy business called Beyond Analysis. It was inspired by their charity of the year the Rett Syndrome Research Trust UK.

Russian postdoctoral fellow gets her first grant to study Rett syndrome

Rett Dad — Tue, 07 Feb 2012 21:25:27 +0000

The International Rett Syndrome Foundation has funded a two-year grant to Anna Kalashnikova, a researcher at Colorado State University for basic MECP2 research. Most postdocs don’t get grants at that stage of their careers. This article captures her enthusiasm upon receiving the news:

Rett father Colin Hand performs on The Voice of Ireland

Rett Dad — Tue, 07 Feb 2012 20:46:26 +0000

Today’s inspirational story comes from Ireland’s Colin Hand, whose daughter Charlotte has Rett syndrome. Colin performed the song “Smile” on The Voice of Ireland television show. We agree with the judge that he has “buckets of potential”! See for yourself at the link below:

Research discovery may lead to new treatment for Rett syndrome

Rett Dad — Thu, 26 Jan 2012 21:56:40 +0000

Researchers at Oregon Health & Science University have discovered that brain-derived neurotrophic factor (BDNF) is severely lacking in brainstem neurons in mutations leading to Rett syndrome. This sheds light on what determines availability of the molecules involved in cardiorespiratory control.

Check out the New Jersey Rett syndrome symposium on February 13th

Rett Dad — Thu, 26 Jan 2012 16:07:35 +0000

If you’re in the vicinity of New Brunswick, New Jersey, here’s an event you won’t want to miss. This all-day session, featuring nationally known experts in Rett syndrome, is designed for both parents and professionals.

Girl with Rett syndrome demonstrates the Tobii assistive communication device

Rett Dad — Tue, 24 Jan 2012 09:52:24 +0000

Check out this self-proclaimed “smart and beautiful” girl named Kelly as she demonstrates the Tobii C12 assistive communications device. Make sure you watch until the end…it will warm your heart!

Click here for more information about the Tobii device

Girl with Rett syndrome enjoys therapeutic benefits from special hand trike

Rett Dad — Mon, 23 Jan 2012 13:36:59 +0000

This article shows that a girl with Rett syndrome can be safely belted into a hand trike and pulled, thereby keeping her legs in motion and building muscle tone:

Click here to see the Ambucs Amtryke Tricycle with Saddle Seat

Girl Scout with Rett syndrome finds voice through technology

Rett Dad — Mon, 23 Jan 2012 10:22:03 +0000

This heartwarming story spotlights the benefits of eye tracking technology that may open a whole new world of communication for some people with Rett syndrome:

Woman with Rett syndrome dies just 17 months after sexual assault

Rett Dad — Mon, 16 Jan 2012 16:35:36 +0000

The health of a 27-year-old with Rett syndrome deteriorated rapidly in the months after an August 2010 attack at a respite centre by a serial offender. A neurologist’s report had characterized the effects of the assault on the young woman as post traumatic stress disorder:

Rett father reviews the upcoming Fox drama “Touch” for the New York Times

Rett Dad — Sun, 15 Jan 2012 01:16:47 +0000

Neil Genzlinger, whose daughter Abby has Rett syndrome, is an American playwright, editor, book reviewer, and theatre and television critic. He writes for The New York Times, where he’s a copy editor. His reviews sometimes include his unique perspective on Rett syndrome. Here’s his latest: