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About the Book
The goal is to photograph portraits of adults living with CF. Beside each of their portraits will be something they have personally written - it could be their feelings, an experience, thoughts about their future, whatever. The goal is to raise awareness that people are living longer because of advances made in the medical community, advances made through generous donations. The public perception is that CF is still very much a childhood disease. By putting a new face on Cystic Fibrosis we want to change the perception, and show that research through donations is making a significant change for the better. But adults are dealing with other problems as well, and this is to also shed some light and understanding on the other issues adults with CF deal with.
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I am looking to photograph minimum 50 people, even upwards of 100 (depending on funding) right across North America.I have to be very clear that a good portion of the money raised will be used for the production of the project - car rentals, hotels, GAS, gear rentals, etc. HOW FAR I can travel depends on donations!!!!!
I am looking to raise (at least) $10,000... but more is of course better.
This will provide enough to produce the project, and still have enough for a great donation... hopefully.
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(Portrait #1 taken. James, age 34)
I am a portrait and fashion photographer (and art director) based in Hamilton, ON (Canada). I am also a 45 year old male with Cystic Fibrosis. Luckily my diagnosis is considered a milder variant of the disease, but it is CF nonetheless. I was diagnosed about 7 years ago. Before that I had no idea, but looking back on my life I always had the symptoms, just no one ever knew it was CF (like incredibly salty sweat). It wasn’t until I was unable to have children I was finally diagnosed, with F508 del and L206T mutations.
How many times have people said “Really? But you’re 45.” when I tell them I have CF. It is still assumed by many that it is a childhood disease.
Life expectancy, even 20 years ago, wasn’t that great when diagnosed with CF. That has changed now, and my goal is to bring awareness that because of these medical advances, overall life expectancy has greatly increased. This is only done through research, and donations.
But what many don’t realize is adults living with CF have a whole host of other issues to deal with, many of them psychological. Besides having to deal with the main physiological symptoms of CF, studies are finding adults living longer with the disease are battling depression, Quality of Life issues, panic attacks, coping with these major life changes, self-esteem issues, substance abuse, and more.
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The main goals:
• CF awareness leading to donation.
• Awareness of issues regarding Adults with CF.
• Get people to sign their Organ Donor Cards!!!!!!!
• To get people to donate as much as possible - either through this fundraiser or to the foundations directly.
• Book deal with international publisher, all proceeds to CF.
• Tentative: awareness through travelling gallery show, large prints.
WHAT YOU GET:
• The book. At least 50 portraits of people living and dealing with this disease.
My focus is mainly North America, due to the cost of travel. But could this go International? Why not! With the right support and funding lets go worldwide. The plan is to have this as a multi-tiered project: awareness will be gained by the exposure of the project in a final book form, that can be promoted (i.e. morning talk shows etc).
What is CF?
Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 70,000 worldwide have CF.
There is no cure. Cystic fibrosis causes various effects on the body, but mainly affects the digestive system and lungs. The degree of cystic fibrosis involvement differs from person to person. However, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, eventually causes death in the majority of people who have cystic fibrosis. Typical complications caused by cystic fibrosis are difficulty in digesting fats and proteins; vitamin deficiencies due to loss of pancreatic enzymes; and progressive loss of lung function. The life expectancy of a child with CF has doubled in the last 30 years, and research to find a cure is more promising than ever before.
From www.cff.org
“In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. More than 45% of the CF patient population is age 18 or older.”
My project focuses only on adults, giving a new face to CF that it hasn’t had in the past.
More info
http://www.ianpettigrew.com/adults-with-cf-project.html