Rett.com

MECP2 and Rett Syndrome in Males

Rett Dad — Wed, 02 May 2012 21:36:22 +0000

RettUK.org published this interesting paper which focuses on the subject of Rett syndrome in males. Much has changed over the past 10 years as researchers and clinicians encounter more boys with this disorder. We are trying to be more mindful of including males in our discussions with others about Rett syndrome, so we are more often using terms such as “children with Rett syndrome” or “people with Rett syndrome”. Check out this paper here:

Daughter has Rett syndrome, and mom demands a voice in her education

Rett Dad — Wed, 02 May 2012 21:17:34 +0000

This story illustrates some major challenges Rett parents face in getting the appropriate school supports and services for their children. What is particularly shameful is that District officials say strict privacy laws that prevent them from providing board members with details about the situation! CLICK HERE TO READ MORE

Rett syndrome researchers extol the importance of families to their work

Rett Dad — Thu, 09 Feb 2012 22:52:11 +0000

This video from the International Rett Syndrome Foundation features researchers and clinicians who are on the leading edge of Rett syndrome research and treatment. They stress the importance of meeting those with Rett syndrome along with their families. This brings not only a warm human connection to their work, but provides them valuable feedback and first-hand insight into the disorder.

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