Photographer 'illuminates' rare cancers

Updated 1151 GMT (1951 HKT) May 31, 2016

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Taylor Babcock was diagnosed with acute lymphoblastic leukemia, or ALL, at age 4. She is a survivor and now an advocate.<br /><br />"You either let cancer hold you down and stand on top of you, or you use it as a platform to bring you up. Other kids living with cancer -- they're my drive for wanting to make my experience with cancer positive instead of letting it drag me down."

Photos: 'Rare Cancer Illuminated'

Taylor Babcock was diagnosed with acute lymphoblastic leukemia, or ALL, at age 4. She is a survivor and now an advocate.

"You either let cancer hold you down and stand on top of you, or you use it as a platform to bring you up. Other kids living with cancer -- they're my drive for wanting to make my experience with cancer positive instead of letting it drag me down."

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Ezra, Noah, Judah and Josiah Dover are also ALL survivors. <br />According to their parents, "rare cancer can be an isolating experience because many do not know anyone else who has walked the same path, and therefore don't understand the challenges they face. We'd like our story to offer hope for families who find themselves on that same path."

Photos: 'Rare Cancer Illuminated'

Ezra, Noah, Judah and Josiah Dover are also ALL survivors.
According to their parents, "rare cancer can be an isolating experience because many do not know anyone else who has walked the same path, and therefore don't understand the challenges they face. We'd like our story to offer hope for families who find themselves on that same path."

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Photos: 'Rare Cancer Illuminated'

Ali Stunt founded Pancreatic Cancer Action in the United Kingdom and is the chief executive officer of the organization. She was diagnosed with the disease in 2010.
"I am one of the few to survive beyond five years with pancreatic cancer. There is greater awareness for pancreatic cancer, but survival has not improved. We need to be diagnosed earlier and in time for potentially curative surgery, and have equal and better access to care."

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Photos: 'Rare Cancer Illuminated'

Katharina Stang founded TEB e.V. Germany (translated as Tumors and Diseases of the Pancreas) as a self-help organization after experience with her own related illness. The organization works to give people with cancer and other diseases of the pancreas the support, courage and confidence to seek competent information that will improve their quality of life.

"Pancreatic cancer is a disease that affects the entire family. Oftentimes, the relatives are much worse off than the person diagnosed. People with pancreatic cancer have a very limited timeframe. In order to help fill that time with purpose, we must embrace everyone involved to show that, in spite of this difficult disease -- in spite of the suffering -- they can still live and maybe even enjoy life with their family."

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Photos: 'Rare Cancer Illuminated'

Stupid Cancer is the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media. The organization was founded in 2007 by Matthew Zachary, a childhood brain cancer survivor of 21 years.

"This is a population who needs to know they're not alone. Storytelling is what social change is all about; it's the opportunity to give people what they didn't know they needed so that they can get busy living."

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Natalija Frank is a founding member of PAN-Austria, the Patient Advocacy for Adolescents and young Adults with Neoplasia. <br />PAN-Austria works to support adolescents and young adults with neoplasia. Frank, who lost her father to cancer at age 17, is also executive manager for clinical research and coordinating manager for patient and care affairs at the Comprehensive Cancer Center in Vienna, Austria.<br /><br />"I am very aware that cancer instills a sense of fear that no one wants to be confronted with, which can make the work of patient advocates difficult. We won't stop raising awareness until people in countries around the world can access state-of-the-art treatment and necessary support."

Photos: 'Rare Cancer Illuminated'

Natalija Frank is a founding member of PAN-Austria, the Patient Advocacy for Adolescents and young Adults with Neoplasia.
PAN-Austria works to support adolescents and young adults with neoplasia. Frank, who lost her father to cancer at age 17, is also executive manager for clinical research and coordinating manager for patient and care affairs at the Comprehensive Cancer Center in Vienna, Austria.

"I am very aware that cancer instills a sense of fear that no one wants to be confronted with, which can make the work of patient advocates difficult. We won't stop raising awareness until people in countries around the world can access state-of-the-art treatment and necessary support."

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Story highlights

Rick Guidotti captured photos of people affected by rare and underserved cancers
The photos will be showcased in an exhibit in Chicago called "Rare Cancer Illuminated"

(CNN)The radiant faces in photographer Rick Guidotti's newest exhibitions don't look like they belong under the title "Rare Cancer Illuminated." And that's exactly the point.

"I am not photographing a disease; I am photographing hearts, passion, strength, beauty and community," Guidotti said. "This is about seeing beyond the diagnosis, seeing humanity and honoring that human being and their dignity."

The former fashion photographer, who was known for his images of Cindy Crawford and other famous models in the 1990s, was forever changed when he saw a girl with albinism and realized that the fashion industry wouldn't classify her differences as beautiful. But Guidotti saw beauty everywhere. It was after that fateful moment that he learned everything he could about genetic differences and launched his project, Positive Exposure.

Seeing the beauty in genetic differences

In his latest exhibition, Guidotti shares positive portraits of patients, family members, advocates and health care professionals impacted by rare and underserved cancers. These diseases, like pancreatic cancer, myelodysplastic syndromes and acute lymphoblastic leukemia, affect children, teens and adults alike.

In the United States, rare cancers are defined as fewer than 15 per 100,000 cases per year. Patients with underserved cancers may not receive physical or emotional resources, and patients often struggle to have their diseases diagnosed and treated properly. Guidotti hopes that his exhibit, which will debut in Chicago on June 2, before the 2016 American Society of Clinical Oncology annual meeting, will help bring rare cancer communities together.

"Even though they came from different communities, I saw similarities in the people I photographed," Guidotti said. "They had the same passion, enthusiasm, sadness and push for inspiration, and through such strength, they just owned it. They have the same drive to change the way people see rare cancers. They were alone, but through this, they said they began to realize they weren't alone all along."

'Softness in the struggle': Living with a disability

In addition to raising awareness, the goal is to encourage greater collaboration between rare cancer communities to discover treatments, to provide better access and support and to more efficiently diagnose these conditions.

Guidotti worked with biopharmaceutical company Baxalta to reach out to 20 rare-cancers organizations to find ambassadors and advocates for his photo series. He wanted to give them a platform for voice and visibility.

He approached each session like he would a fashion shoot, learning each person's story and working with them on how they wanted to be captured.

"Each ambassador realized they were talking to the world," Guidotti said. "I just watched them light up after that. Self-acceptance creates self-esteem, which leads to self-advocacy. They take such pride in what they are doing, and their impact will be magnificent."

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Like with other projects Guidotti has worked on, such as the "On Beauty" documentary and photo series highlighting rare genetic differences, he hopes that "Rare Cancer Illuminated: A View from Within" will spark a dialogue that only continues.

"I want people to see their stories and feel inspired to use their own talents to celebrate human diversity and create new and incredible initiatives," he said. "We want to start little storms that keep on going."