Analyn Scott swipes through the pictures on her phone, finds the one she is searching for and proudly holds it up for all to see. The picture is of a man and woman in full Dancing with the Stars costumes, frozen mid-step in what appears to be a very energetic dance.
“Tell me if that looks like someone on dialysis!”
The man in the picture is Analyn’s husband Raymond, who in 1998 suffered kidney failure due to high blood pressure at the age of 29, and who despite being on dialysis, participated in a Dancing with the Stars competition in Arizona just last year.
Proving that just because you have kidney disease doesn’t mean you can’t live a full life, is just part of the message being promoted by 1in9, an initiative co-founded by Analyn and Raymond Scott of Phoenix, Arizona. The organization hopes to increase the awareness of kidney disease by educating the public on the risk factors and prevention of kidney disease, and promoting scientific advancements in the field of regenerative medicine. The name of the foundation, 1in9, refers to the fact that chronic kidney disease affects 1 in every 9 adults in the United States, a total of 26 million Americans.
The 1in9 initiative recently kicked off a Kidney Awareness Road Show. Analyn and Raymond are traveling across the United States in a 35-foot RV, visiting medical facilities and speaking to groups about kidney disease.
Analyn and Raymond, accompanied by their son Kenyon and daughter Brooklyn, stopped by the Division of Nephrology at Washington University School of Medicine and toured the laboratory of division chief Dr. Benjamin Humphreys. Researchers in his laboratory are attempting to grow miniaturized kidneys, or organoids, from human stem cells.
Dr. Humphreys explained that while this approach holds a lot of promise, “We still have lots of challenges to bring it to fruition. But it’s exciting to us that we are able to get this far and grow something that when you look at it under the microscope that it really looks like a kidney.”
“This is so exciting,” says Analyn. “Even if it takes longer, the promise of this [growing kidneys], is exciting considering there is such an organ shortage in the world. There are 120,000 people on organ donation lists now, and 100,000 of them are all waiting on kidneys.”
Analyn and Raymond’s mission began just over two years ago. In fact, Analyn recalls exactly when the “Aha!” life-altering moment came to her. Raymond was invited by his nephrologist to attend a major fundraiser sponsored by the National Kidney Foundation (NKF) of Arizona. The annual NKF-AZ Dancing with the Stars event features Arizona celebrities and community leaders partnered with professional dance instructors. The funds generated from the dance competition are used for kidney disease education throughout the state.
“We weren’t really that involved in the kidney community other than Raymond being on dialysis,” says Analyn, “and being at Dancing with the Stars opened our eyes. So, we were there and I was teasing Raymond, saying ‘Watch out, that might be you dancing next year’!”
Analyn says a “Ding!” went off in her head, and she thought, Why not?!
The following year at the 10th anniversary of the NKF-AZ Dancing with the Stars fundraiser, February 20, 2016, Raymond jive-danced to the song “Happy”. That night was exactly 18 years to the date that his kidneys failed. “He really enjoyed himself,” says Analyn. The pictures of that dance are what Analyn now so proudly shares.
Raymond’s battle with kidney failure, the Dancing with the Stars competition, and the road trip are being chronicled in a documentary that the Scotts plan to submit to the 2019 Sundance Film Festival.
“But, there is a bigger need here than just a documentary,” says Analyn. “We need a movement and we need an organization. We need to keep this think going. So, that is how 1in9 was birthed. It’s been the biggest faith walk of my life. But I can’t imagine us doing anything else.”
“Raymond … he’s been through a lot, and he keeps such a positive outlook and attitude.” The couple had only been dating for four months when Raymond’s kidneys failed, one week after Valentine’s Day. They stayed together, deciding to “take a chance on life”.
“Here we have these two beautiful children now, and what we’re doing [with 1in9], it makes it worth it,” says Analyn. She quotes Raymond as saying: “If we’re able to help people with this, then it makes it worth it. I’d go back and do it all over again.”