Photographer 'illuminates' rare cancers

By Ashley Strickland, CNN

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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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. <br />"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."
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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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.<br /><br />"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."
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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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.<br /><br />"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."
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."