Inconceivable. That’s the word that photographer Dave Clements uses to describe the emotion swelling in his stomach when thinking back to March 9, 2003. It was that spring afternoon in Houston, Texas where Clements and his wife watched their now friend, musician and photographer Kevin Black, say goodbye to his only daughter, Cortney. Cortney was 16 years old when she passed away from complications with Rett.
“It was inconceivable then and it still is today,” Clements said. “You can’t help but put yourself in his shoes, especially as a dad with a daughter the same age. I didn’t even know how to spell Rett syndrome at the time, but I knew that it needed to go – and it needed to go now.”
At the time, Clements had just begun taking on a little work for Black – booking gigs and taking photos here and there – but Cortney’s passing changed the dynamic of the men’s relationship.
“He was there for me,” Black said of Clements’ friendship. “Still is. Truthfully, when Cortney died, I wanted to be done with Rett syndrome. I wanted to take my memories of her, raise my two sons, and kick Rett out of my life. But it didn’t happen that way because I met Dave Clements.”
Scientists have long linked the effects that people can have on our own biology. We are a social species, after all. Across the world for centuries, humans have facilitated each other’s healing in times of pain by providing critical psycho-social support. Humans like Black and Clements.
“Of all the people I know, the person I have spoken the most to on this Earth is Kevin [Black],” Clements said. “By an order of magnitude.”
The connection the men have built with one another and the Rett community at large over the past 20+ years has turned into a lifelong mission to help find a cure. To date, their efforts have not only raised hundreds of thousands of dollars for Rett research, but they’ve also continued to build awareness of the disorder that affects about 1 of every 10,000 female births and is even rarer in boys.
Humble Beginnings
The beginnings of these fundraising efforts were quite humble. “We didn’t know anything about fundraising,” Black recalled with a smile. “We just knew that we wanted to help families who were going through Rett and to honor Cortney. It was a way to channel grief into something positive. I think we spent six months planning our first golf tournament and it didn’t raise very much money. But it raised some. So we kept going.”
From golf events and a concert series to bay fishing tournaments and art shows, the two continued to pour themselves into the fight against Rett. They had a strong community of support in Texas – including Black’s brother, country music artist Clint Black – but they started to feel the weight of their continual ask for donations.
“So many people helped finance our mission just for the satisfaction of helping,” Black said. “It was remarkable. But there came a point where we wanted to offer something beyond that satisfaction of giving. That’s when Dave [Clements] had the idea for the book.”
A Change of Path
While he had a successful 30+ year career in corporate America, Clements decided that there was more to life. Contemplating retirement, he wanted to find something that would both challenge and inspire him, so he picked up a camera and started studying the art of photography. He found a mentor who helped him get a lot better very quickly, and three years later, at 56, he was able to retire and start chasing his passion with no idea where it would lead.
That passion and a love of music led him to cross paths with Black.
“I was getting ready to leave my corporate career when I met Kevin for the first time,” Clements said. “He was gracious enough to sign some sheet music for me that I wanted to gift to my wife. On my way out, I casually mentioned that I was leaving my job and if there was anything that I could do for his career, to let me know.”
Serendipitously, Black needed management at the time. “Sometimes you have to watch what you say because people take you up on it,” Black chuckled. “I knew Dave was a smart guy and I knew he loved music. He never expected me to call him, but I did.”
At the time, Clements didn’t know that Black was a father let alone that he was raising a daughter with Rett syndrome. Just a few months after their meeting, Clements found himself at Cortney’s funeral.
“No family should have to face this,” Clements said. “That day changed my life.”
The Book
“I was performing at a benefit concert for hurricane victims when Dave took a photo of me at the end of the song, God Bless the USA,” Black said. “My right hand was reaching to the sky and my eyes were closed. I can feel the emotion in that photograph.”
So could Clements. Looking back through his photo catalog of musicians, he realized that many of them had their hands raised. Symbolically, raising a hand can be a gesture of salutation or anger, a demonstration of support or supplication. But perhaps best of all, a raised hand can symbolize accountability. A simple act that says, “I’m all in.”
With hundreds of photographs in his arsenal, Clements sorted through them to see which musicians he had captured raising their hands. There were hundreds. A book idea was born.
“The thing that I’m most proud of about this book is that right from the beginning, it was always going to be about raising money and awareness for Rett syndrome,” Clements said. “It was never about us. We were looking for an opportunity to expand our fundraising efforts outside of the Houston and Texas area and this book allowed us to do that.”
Clements and Black got to work. The project reignited Black’s passion for photography, and the men set out on a three-year journey of capturing images, writing text, and self-publishing. Obtaining permission from the artists proved to be the most tedious part of the process. While nearly all of them were happy to participate, there were many obstacles to navigate around in order to get the request in front of the right people. Still, the men forged on and published Raising A Hand: A Photographic Music Festival With A Cause. Initially, they thought it would be a single volume.
“We sold almost 10,000 copies of our first volume across 42 states and seven countries,” Black said. “But we knew that selling 10,000 books wasn’t going to fix Rett syndrome. At first, we were reluctant to do volume two, but we had a whole bunch of artists who weren’t involved in volume one that we wanted to feature. So, we kept going.”
The first volume features photographs of artists from Bob Seger and Willie Nelson to Merle Haggard and Sir Paul McCartney. Each page includes an anecdote about the artist’s life and oftentimes a personal note from Clements or Black. Most notably, the collection also tells Cortney’s story and includes information about the disorder. An informational piece showcased as art.
“At the end of volume two we didn’t cure anything either, but we did manage to make a difference,” Black said. The difference could be found not only in the money raised from book sales but also in the hundreds of dedications to Rett warriors across the globe that were included in the pages. “We were steady at the helm while the scientists were steadily cracking the code – they figured out how to reverse symptoms in laboratory mice. They were able to create a new medication that was slowing down and reversing some of the symptoms of Rett…allowing children and their families a little bit of a better life and a greater hope. So, we decided to do volume three.”
The third volume wraps up the series of Raising A Hand books, now available for purchase in a limited-edition special collectors’ box. The time and resources put in by Clements and Black are all volunteer. Their goal is to ensure that all proceeds from the book are donated to IRSF in support of families and finding a cure.
“We have a nice inventory of special collection boxes available for purchase this holiday season,” Clements said. “Between now and Christmas, we are offering the entire limited-edition collection – all three books – for just $100. We will even cover the shipping cost. The books do the most good when they are being opened up in homes. Our mission is to turn these books into money that can then be sent to IRSF.”
The books are available for purchase on the www.RaisingAHand.com website.
“We faced many setbacks along this journey but we kept getting smarter after each volume,” Clements said. “To date we’ve raised over $890,000 through this book project and we are going to hit a million dollars in the next twelve months. For two old guys that had a chance connection in Texas to be doing this in honor of our daughters and all of those living with Rett syndrome, it feels pretty darn good.”
For Black, he looks at the past two decades of work as a testament to the love he still carries for his daughter and the friendship he has formed with Clements. He speaks of music having healing properties and even penned a song titled, Raising A Hand, in honor of his daughter.
“I know I’m a better person because of Cortney and my two sons are better humans because they had her as a sister,” he said. “I get up every day with a goal in mind, but sometimes God has a different plan. I just keep showing up and letting Him lead the way.”
Dave and Kevin – thank you for showing up for our Rett families. By an order of magnitude.
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