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Summer 2019 RARE Cancer

RARE Cancer 

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RARE Revolution Editor, Nicola Miller introduces our specialist section on RARE Cancer which delves into the uncommon and rare cancers that we know so little about, and the people behind them. It’s time to beat cancer and let’s make sure that includes the rare ones too!

Our RARE Inspiration is Marie Curie- women of science: Marie Curie, a celebrated physicist and chemist is remembered for the discovery of radium and polonium, and her huge contribution to the fight against cancer. Her legacy continues to inspire medical research in this fight. Here we pay tribute to her innovation, ground-breaking research and scientific discoveries that have changed the field of cancer. 

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The real impact of cancer through photo honesty – Set against a backdrop of modern world obsessed with filters and perfection, Graham Miller is challenging these false perceptions with his really real, honest photography. Graham met Holly, who has Neurofibromatosis type 1 (NF1, he followed her year long journey with chemotherapy and together they are breaking down barriers by giving a visually honest and raw account of the true experience of undergoing cancer treatment 

Graham is a documentary photographer with an MA from the University of the Arts, London. He has over 10 years’ experience of photographing people with vulnerabilities; documenting those with mental health issues, autism and Downs syndrome. His work has been widely published and exhibited at home and abroad. Two years ago, he decided to focus on rare conditions an area he felt was underrepresented. 

Graham met Holly through the charity @Funny Lumps. The photos of Holly and her family are real, heart-breaking, harrowing and beautiful as Graham charted the painful journey Holly, and many other children go through. Graham commented how sitting with a camera in his hand during the most personal and distressing moments for Holly could sometimes feel like prying but over riding this was a real privilege to be present. 

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Disrupting the drug development process to accelerate new treatments for children with cancer. The time for change has come, but can charities take the initiative to accelerate paediatric cancer treatments? Cesare Spadoni, chairman of APODD, believes so and here he explains how:

‘No life cut short by cancer, the research can never stop’ @worldwidecancerresearch they are a charity that funds research into any type of cancer anywhere in the world. They fund world-renowned specialists to up and coming talent, the charity is committed to better understanding cancer and gaining a global perspective through the projects they fund. In our RARE Cancer issue Worldwide Cancer Research talk to us about how through their funding and collaborations they are helping to realise their vision: No life cut short by cancer, the research can never stop! 

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Raising the bar: Patient advocates 

Shazia Ahmad is a Director at UBC, Patient & Physician Services. UBC are a provider of pharmaceutical support services, and as a stakeholder working to support drug development, Shazia gives RARE Revolution two patient advocacy stories that she thinks really raise the bar in advocacy and that we can all learn a lot from in understanding the complexities of being a child with cancer. 

The Promise- rare cancer in cinematography 

‘The Promise’ is a documentary giving critical perspective to the impact of cancer on children, but also looking across the care spectrum – from the parents and subilings, to doctors, politicians and advocates. It is produced by NYC/Long Island based production company Risk It Productions. 

When Donna Speckhard (Executive Producer of The Promise) experienced a friend’s child pass away from cancer, she made a promise to him that she would be an advocate in bringing light to the important issues that affect all stakeholders in the childhood cancer community. She and Kristi Gatto (Founder of Risk It Productions) teamed up to create ‘The Promise’, a docuseries chronicling the impact of a cancer diagnosis (in most cases rare) on the child patient but also on their family. She has done this by bringing the powerful patient voice in the series prologue, which our Editor in Chief had the opportunity to see at a then recent screening highlighting ‘Elizabeth’s Story’. The docuseries focuses on Elizabeth Weidner and her family currently battling Stage IV Neuroblastoma. 

The prologue provided a raw glimpse of what treatments are like for a young patient with a  rare cancer, and the challenges faced no only by the child, but also the entire family. As stakeholders working to support drug development and advocate for patients, there is so much that can be learned from this captivating documentary. 

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Our American power couple, Sammy Witness and her Husband are tearing down taboos in our RARE Cancer article Let’s talk about sex baby! When Sammy found herself supporting her husband after his cancer diagnosis, she found that they lost intimacy and this had a huge impact on their relationship and her own wellbeing. Sammy wants to open up the discussion about sex with more support from within the healthcare system to help couples and individuals navigate the difficult waters of living life with cancer.  ” When my husband was diagnosed with stage IV pancreatic acinar cell carcinoma at the age of 25, the primary focus from every angle was to keep him alive. No one talked to us about sex, it wasn’t even a side effect topic. The typical stage IV pancreatic cancer patient lives for two years, at best. The first conversation about sex was with our second oncologist consultation, in which we learnt that because my partner may have a mutated gene we should ” probably not have children because they would likely carry that gene”. When our parents offered to help him freeze his sperm, my first thought was, ”For what? They’ve pretty much told us that he’s dying and that our children would also die. That sounds like an expensive mistake.” **Spoiler alert, he’s now 29 years old and after four years of ass kicking, his last scan showed no evidence of disease, We’re married now and he’s running for city council in Seattle to do whatever good he can in whatever amount of time the universe will allow him to work with.. Whether you’re experiencing chronic disease or facing a fatal prognosis, we’re all humans with human desires. I’, determined to write a book on how to work through these challenges and find a way to have a healthy sex life and partnership when you or your partner are chronically ill.

Kathleen Hendry is mother to three boys and talks to RARE Revolution about the power of telling a human story. Two of her sons had childhood cancers, acute lymphoblastic leukaemia (ALL) and hepatoblastoma. As a rare disease advocate, the State Ambassador for NORD’s Rare Action Network and a full-time student, Kathleen works tirelessly to raise awareness and by retelling her families very personal story she often has to relive some of the most intimate, painful and frightening moments of her life over and over again. 

‘I have been doing rare disease advocacy since 2008 when my youngest son, then two years olf, was diagnosed with acute lymphonlastic leukemia. Hardly a rare form of childhood cancer, but we were still rare none-the-less. The doctors swore then, in that hospital room, that my other children were safe. Childhood cancer was like a lightning strike they said, it was rare, to begin with, and my other children were nt as risk of getting cancer too. But then they did…

#RARECancer charity spotlight 

Uplifting Athletes bringing funds and awareness through the full might of sport 

There are approximately 350 million rare disease patients worldwide 

In the United States that number is roughly 30 million

There are more than 30 million American college football fans that support their favourite team 

Imagine if those 30 million fans channelled the same enthusiasm and passion for rare disease as they do for the sports team they support… That is what we are working hard to accomplish. 

We are Uplifting Atheletes.

Defying all odds- Keeping one step ahead of cancer 

More often than not the best advocates, charities and foundations are born from personal experience. PTEN Foundation was founded by Kristin Anthony in 2013; the mission, to find treatments or therapies for PTEN syndromes by funding research, providing education, supporting patients and raising awareness. Kristin talks to us about the foundation and her very person connection with PTEN.

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