IRSF and CureRett – Raising a Hand for Rett

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About Rett Syndrome

As seen through the eyes of someone who knows
Rett syndrome (RTT) is a neurological disorder, found primarily in females. The girls progress normally up until about 12 to 18 months of age when the characteristics of Rett start to reveal themselves. All the social skills and motor skills they have obtained slowly cease to progress, starting a process of regression to what is the equivalent of living the rest of their life as an infant. They lose the use of their hands, and the ability to speak, and most are bound to a wheelchair. Parents and siblings become 24-hour caregivers, changing their lives forever as well…  Kevin Black
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Hands are raised in anger. Hands are raised in supplication. Hands are raised in salutation. But best, hands are raised in accountability. As in, ‘Count me in.’ Joining the throngs who support – whatever it is. In this case, those with Rett Syndrome. Those whose lives were cut short at an early age. Those whose potential could never be realized. Think of them, their families, and their friends. Lend a hand. A hand offered, raised or otherwise…

Ian AndersonBritish singer/songwriter (Jethro Tull)

There are so many good souls out there like Dave and Kevin and people want to know that. They want to hear about it. Everybody wants to know that that still exists in this world. I know it matters. If I didn’t think that, truly, [my world view] could ‘go dark’ real quick.

Tony ArataSongwriter who penned Garth Brooks’ “The Dance”

I see hands raised in appreciation and waving back and forth or holding a light– a happy and positive experience for all and a symbol of unity and undying love. Let us raise our hands together for those who have fallen from Rett syndrome and for those who now suffer and raise a positive example of our unified hope for a cure for Rett’s disease high up in the air–others will follow.

Mark FarnerGrand Funk

I’m just thrilled to death to know that my picture’s gonna be in the same book with Gene Simmons and Billy Gibbons!!… Hell, man. That’s cool!

Mark ChesnuttCountry Music Artist

I cannot imagine what it is like to watch your child suffer with something as difficult as Rett Syndrome. I can only do my best to help raise awareness and hopefully one day there will be a cure.

Pat GreenGrammy-nominated Texas Music Artist

Raise a hand and perhaps raise a voice. Join together in a volunteer effort to make someone else’s life a little better.

Michael GrimmWinner of NBC’s “America’s Got Talent

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The longest march started with a single step!

KEVIN BLACK . COM
Kevin Black penned this song & produced the video with the same name to help raise awareness for the dreadful disorder that took the life of his daughter Cortney.
The song is available for purchase on all music platforms with a portion of every purchase going to Rett research.

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Home

About Rett Syndrome

As seen through the eyes of someone who knows
Rett syndrome (RTT) is a neurological disorder, found primarily in females. The girls progress normally up until about 12 to 18 months of age when the characteristics of Rett start to reveal themselves. All the social skills and motor skills they have obtained slowly cease to progress, starting a process of regression to what is the equivalent of living the rest of their life as an infant. They lose the use of their hands, and the ability to speak, and most are bound to a wheelchair. Parents and siblings become 24-hour caregivers, changing their lives forever as well…  Kevin Black

The Book / The Song

The Book

Volume I

Volume II

Volume III

The Song

Galleries & Reviews

Artist's Comments

Hands are raised in anger. Hands are raised in supplication. Hands are raised in salutation. But best, hands are raised in accountability. As in, ‘Count me in.’ Joining the throngs who support – whatever it is. In this case, those with Rett Syndrome. Those whose lives were cut short at an early age. Those whose potential could never be realized. Think of them, their families, and their friends. Lend a hand. A hand offered, raised or otherwise…

Ian AndersonBritish singer/songwriter (Jethro Tull)

There are so many good souls out there like Dave and Kevin and people want to know that. They want to hear about it. Everybody wants to know that that still exists in this world. I know it matters. If I didn’t think that, truly, [my world view] could ‘go dark’ real quick.

Tony ArataSongwriter who penned Garth Brooks’ “The Dance”

I see hands raised in appreciation and waving back and forth or holding a light– a happy and positive experience for all and a symbol of unity and undying love. Let us raise our hands together for those who have fallen from Rett syndrome and for those who now suffer and raise a positive example of our unified hope for a cure for Rett’s disease high up in the air–others will follow.

Mark FarnerGrand Funk

I’m just thrilled to death to know that my picture’s gonna be in the same book with Gene Simmons and Billy Gibbons!!… Hell, man. That’s cool!

Mark ChesnuttCountry Music Artist

I cannot imagine what it is like to watch your child suffer with something as difficult as Rett Syndrome. I can only do my best to help raise awareness and hopefully one day there will be a cure.

Pat GreenGrammy-nominated Texas Music Artist

Raise a hand and perhaps raise a voice. Join together in a volunteer effort to make someone else’s life a little better.

Michael GrimmWinner of NBC’s “America’s Got Talent

Photo Galleries

From All Of The Three Volumes

Videos

See What People Are Saying!

Reviews

Read What People Are Saying!

Our Mission

Why a Book

Two Dads

News & Press

News

Media Kit

The FAQs

Share Our Site with Friends and Family.
The longest march started with a single step!

KEVIN BLACK . COM

Kevin Black penned this song & produced the video with the same name to help raise awareness for the dreadful disorder that took the life of his daughter Cortney.
The song is available for purchase on all music platforms with a portion of every purchase going to Rett research.

Get or Use a Spotify Account

Amazon

YouTube Music

Apple Music

Cart

IRSF and CureRett

April 18, 2015

rahadmin

IRSF and CureRett have come together to share a message of hope and strength this holiday season with everyone in our Rett syndrome community, especially with those living with difficulties at the moment. May all feel touched by the magic of hope and friendship in this holiday season. The beauty of our community is that we understand, and we are here for one another.

Share your messages of hope! Comment on this post, share a message on our timeline or your own, share an e-card, drawing, artwork or an uplifting photo from your family. We’ll start with this one, created for every one of you by CureRett.

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