It’s Friday evening in The Woodlands, and Dosey Doe patrons are anticipating the night’s solo acoustic performance by singer-songwriter Jeff Coffey. Coffey, former lead singer and bassist for Chicago, takes the stage to exuberant applause, and the energy in the room takes off as he leads the audience through a series of old favorites, along with new ones from his recent album. Suddenly, Coffey stops the performance. He holds up a thick white book. “Have you seen this?” Coffey asks the audience. “It’s filled with renowned musical artists, and it supports a very important cause. ”
In the back of the concert hall, Dave Clements, official photographer for Dosey Doe, is capturing the moment. Clements and his friend Kevin Black are the creators of the book, and it’s been a long journey to get to this stretch of road.
Clements and Black met in the early 2000’s, when Clements photographed Black performing with his two brothers at Minute Maid Park. Not long after, Clements retired from his career at Exxon Mobil and began to pursue his love of photography. He also reconnected with Black, who was looking for someone to manage his music career. Then, in 2003, Black’s daughter Cortney died at the age of 16. Cortney had been born with Rett syndrome, a genetic disorder that affects approximately one in 10,000 girls each year, with cases rarer among male children. Symptoms of Rett usually become apparent at around 12 to 24 months of age, when children begin to miss developmental milestones. Most children with Retts have no meaningful use of their hands and are unable to talk. Eventually, the devastating disorder can also take away their ability to walk, eat, and even breathe.
While Cortney’s death left Black with the inconsolable sadness and anger of a parent who’s lost a child, it flipped a switch in Clements. His own daughter was nearly the same age as Cortney. More people needed to know about Rett, Clements told Black, because even one case impacted so many lives. “If you’re that 1 out of 10,000 families, Rett is going to rock your world,” said Clements.
One of the most wrenching aspects of Rett for parents, said Clements, is their child’s inability to speak. The International Rett syndrome Foundation website notes that though the cognitive ability of these children is difficult to assess, “…we know that they understand far more than they can communicate to us, as evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.” The Rett community often refers to these children as “Silent Angels.”
Black said that Clements pushed him to stay involved as a way of moving forward and of helping other Rett families. He and Clements organized local golf tournaments, concerts, and fishing tournaments—anything they could do to raise money to support research and awareness. But eventually, Black and Clements felt they had reached a ceiling.
They wanted to reach a far greater circle, and they wanted to ensure that Rett was on people’s minds for more than just a few days a year. “Why not a book?” thought Clements, a book filled with photos of musical artists, taken by Clements and Black. They envisioned a sort “music festival between two covers,” recalled Black, a book that people would want for the book itself, instead of as a trinket in return for a donation. “Here is something for you. Something you can value and keep. Something people can hold onto,” Clements said of the concept.
“Dave recognized that all artists had something in common. They’re really animated with their hands and arms when they perform,” recalled Black. Clements said that when he was growing up, raising a hand meant helping someone. So this became the visual metaphor that tied the images to the cause. The first photo to go into the book was Black’s. “He [Clements] had that original photo in which I was raising my hand” during the Minute Maid Park performance. Now the challenge would be filling the rest of the pages.
What was it like trying to convince artists to say yes? “Depressing!” said Black. “We were two dads trying to make a difference, and it was hard to get past the buffers” that separated them from the actual artists. Things changed when Kevin’s brother, country music legend Clint Black, signed on. Clint had already done amazing work with Clements and Black in support of Rett, even before the book was conceived, and with his name in the “yes” column, doors began to open. The next big break was when Willie Nelson came on board. With these two stars, other artists became accessible. But the road to fill the pages was a still a rough one.
“Dave was the impetus. He’s relentless. If he gets a no, he wants to know why,” said Black. A turning point came when Clements went for broke and contacted a liaison for Paul McCartney. When the music icon’s people came back with an affirmative reply, the door leading to other artists swung open wide. Black said that now they could feel the momentum. “Now, when I would send a request letter to a management company or an artist, in the subject line, I would put the names of five artists who’d already said yes.” Musical artists knew that something important was going on, said Black, and they wanted to be a part.
Black and Clements published the book themselves, and when the proofs for “Raising a Hand: The Book,” finally came in, Black remembers staring down at the finished pages. “I just got so emotional, I was leaning over it, and my tears dropped on the book. I had to leave the room, it was so overwhelming,” said Black.
They handled the marketing of the book themselves too, said Black. “We were ‘Bible-thumpers,’ in our cars! We sold them out of my truck, took them to events, talked about them on Facebook, in emails, and to anyone that would listen.” Their efforts resulted in the sale of almost 10,000 copies and led to a second volume, which was released in August--a beautiful book with a white cover, filled with concert images from 238 artists, including Alan Jackson, Lionel Richey, Garth Brooks, Gene Simmons, Wynonna Judd, and so many others--the book that Coffey held up--and raised a hand for--on that evening at Dosey Doe.
“You start to think of all that transpired during those three years when we hit brick walls, didn’t know how far around, didn’t know if we could climb it. May be we were dreaming, maybe we can’t get this done. Then something would happen in a way that we thought was divine intervention,” said Black.
Black said it’s amazing how many times he’s introduced someone to the book, who then discovers their own connection to Rett through a family member or friend. One of those people is rock artist Jeff Coffey, whose wife has a friend raising a granddaughter with Rett. “We need to find out what’s going on with this disease,” Coffey told the Dosey Doe audience that night. After his performance, he graciously stayed and autographed copies of the book for his fans.
“Jeff is a world class performer,“ said Clements. He said Coffey (whose photo appears in Volume 2), “is an example of the active support of the music community. There he is on stage, touting our book. It’s a great feeling.” This is the kind of moment that Clements and Black have worked for—the tying together of a love of music with the importance of putting Rett front and center—to raise awareness, to fund research, to end Rett.