IRSF Dr. Kaufmann Interview

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

Donate

Cart

Donate

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 Dr. Kaufmann Interview

April 18, 2015

rahadmin

IRSF’s Jennifer Endres interviews Dr. Walter Kaufmann regarding the recent update from the IGF-1 Clinical Trial.

Share:

More Posts

Photographer’s book, Clint Black’s music help fund Rett syndrome research

By Jake Walker jake.walker@theeagle.com Hearing your child say “I love you” is a huge moment for parents, but those who have children with Rett syndrome

IRSF and CureRett

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

Part 1: David Clements on Business Newsmakers Radio

The Song – Raising A Hand

Performed Live by Kevin Black Song Written and Sung by Kevin Black. See the complete story concerning this song in our news section. https://youtu.be/Voa5f7jpZvc?si=9fAeo0wCUEfyV416

Research to Reality Campaign

Rettsyndrome.org is wholly committed to the work these scientists are doing to find treatments and a cure for Rett. In 2015, to aid in this

Send Us A Message

Contact Us

Name
First

Last
Last

Email

Subject

Message

Captcha

If you are human, leave this field blank.

PrevPreviousClint on CNN

NextFinding a Cure for Rett SyndromeNext

Home

The Gallery

The Videos

The FAQs

Media Kit

Privacy Policy | Terms of Use

Facebook-f

© 2026 Raising a Hand for Rett a 501(c)3 ~ All rights Reserved.

Design WEB FX LLC

We Have A Very

Special

Announcement!

The Complete Three-Volume Series
Normally $110.00 | 50% OFF
Just $55 + $15 shipping | Total $70

Make a $70 donation, and simply drop your mailing address in the COMMENTS section during checkout. We’ll take care of the rest — shipping the 3 volumes straight to your door!

DONATE $70

As seen through the eyes of someone who knows

Artist's Comments

As seen through the eyes of someone who knows

Artist's Comments

Share:

More Posts

Send Us A Message

We Have A Very

Special

Announcement!

The Complete Three-Volume SeriesNormally $110.00 | 50% OFFJust $55 + $15 shipping | Total $70

The Complete Three-Volume Series
Normally $110.00 | 50% OFF
Just $55 + $15 shipping | Total $70