Portraits: Adults with CF Fundraising book

I

ianpett

New member
I am an award-winning portrait photographer from 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.


The comment I get the most is “Really? But you’re 45.” when I tell people I have CF. It is still assumed by many that it is a childhood disease.
Maybe because in the past, before more current medical breakthroughs, life expectancy wasn’t that great when diagnosed. That has changed now, and my goal is to bring awareness that because of medical advances, overall life expectancy has greatly increased. This is only done through research and donations. But it is still very much an uphill battle, and thats what I want to shine a light on. The battle isn’t over, and this is not just a childhood disease.
With more awareness comes, hopefully, increased donations and one day a cure.

My goal, through crowd funding via IndieGoGo, is to raise enough money that will let me pursue this project for the next 8-12 months. Travelling will be the biggest hurdle - across the US and Canada, maybe even to UK.
The aim is through funding via book (and hopefully subsequent PR tour) that enough awareness is raised and donations increase.

RIGHT NOW I am just trying to gauge interest... am I on the right track here? Would anyone like to be involved? I'd love to get a minimum of 100 portraits of adults with CF, of all varying ages, backgrounds etc.
I will be contacting directly the CF Foundations is Canada, US and UK to see if they can help me in any way as well.

Please visit my website link below for a sample page (very rough at this stage). My email is on my website if anyone would like to contact me directly, thanks.

http://www.ianpettigrew.com/adults-with-cf-project.html
 
K

kgfrompa

Guest
Wow you sure have talent I would love to be part of your project!
 
G

Gammaw

Super Moderator
Gorgeous Ian. Amazing. Real people. Beautifully done. Your message about CF could be incredibly powerful. I wish you were local so I could get you to photograph my own little CFer. Don't rule out a book of littler ones.
 
I

imported_MaggieB

New member
Cool idea! I was diagnosed at birth and am turning 40 in a month and a half and still can't believe it! Lots of luck!! You're welcome to stay with us in Philadelphia anytime. Just PM me.
 
S

sdeuber

Guest
I am in and will provide whatever support i can give.
My story reads like yours, Ian. I am 49 - also a mild form and had challenges with having biological children. I got my kiddos thru adoption.
Have you asked cff.org for support?
 
I

ianpett

New member
Unfortunately CFF.org has opted out of providing any fundamental assistance, there reason here:
"While we would like to be able to promote all of them, we do not have the resources, the personnel or the expertise to fulfill all of these requests.
We wish you the best of luck, but are unable to promote your photography project at this time. "

Luckily I still have CF Canada on board, and am working on CF UK as well. Thank you so far for everyone's input and feedback - I think we are going to shed some light on an aspect
of this disease that is very much not discussed as often as it should.

I will keep everyone in the loop once I have another updated on the actual launch of the crowndfunding. thanks.
 
I

ianpett

New member
PS> one thing I am having trouble with right now is a good NAME for the book. any thoughts or ideas would be welcome.
 
M

MiddleAgedLady

Guest
I think it's an awesome idea! I'll be 60 in June with CF. Let me know if you make it to Texas!
 
A

alegris

Guest
Hi,
I think this a great idea. We all have so many and so different stories. I'm also in Ontario in the Ottawa area. If the idea moves forward you could put the idea out at the CF clinics and they could help you recruit adults from the CF community.
Best of luck!
 
A

alegris

Guest
An extension of the idea that just popped into my head - there are people on this site with some really cool CF related tattoos. Maybe some of these could make up another section of the book. Oh and I have some pretty crazy looking scars (and I bet there are some really interesting lung transplant scars out there). Not to get too graphic or scary, but maybe a chapter illustrating our fight for survival and posing with our battle wounds exposed.
 
B

bookperson

Guest
I love this idea and would love to be a part of your project. I'm in Ohio. However, I mostly wanted to contribute a title idea. I used to be a writer and I had this title for an essay I was writing, but never completed. Either "A Patient History" or even just "Patient History" because I like the nuances involved. There's the literal meaning of one's medical record (which all of us CFers have, extensively), and then there is the patience we've had to have as CFers (at least those over 30) waiting for medicine to make greater breakthroughs and help us live longer, more high-quality lives. For myself, I feel like I've been very patient especially after they found the CF gene and thought they were so close to figuring it all out, then realizing that it's not just one mutation but many. And then the gene therapy failures and other hopeful drugs that haven't panned out. But now there's Kalydeco and the current trials for the DDF508 mutation. I'm still hopeful, and waiting patiently:)
 
L

LouLou

New member
I'm interested! I'm 35 yo female with cf. We're a 2 for 1 as my 6 yo son has it too and he's very photogenic if you wanted him too :) I was in the kalydeco trials and am succeeding with cf. we were featured in The Human Face of Big Data project as well as a big CFF two-day photoshoot so have some experience. I'm considering taking my exercise training to a whole new level with fitness competitions. Your photoshoot could be something on the calendar for me to work towards! Two years ago, I took the reigns,after becoming nutritionally deprived (high bmi though. one doesn't need to be thin to be sick nutritionally) and now I'm rocking CF!!! Friend me on Facebook 'Lauren Sandham Brenneman' I'm hardly ever on here. Wish I had more time to be but I'm helping others get healthy too now!
 
I

ianpett

New member
**** Here is my updated synopsis for the project, that should be going live in about a week for Crowdfunding.*****

Adult CF Portrait Project


"JUST BREATHE"
(tentative title)


What is CF?
(from the CF Canada website)
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.”




History


I am an award-winning portrait photographer from 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.
Maybe because in the past, before more current medical breakthroughs, life expectancy wasn’t that great when diagnosed. 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.


This is still very much an uphill battle, and thats what I want to shine a light on. The battle isn’t over, and this is not just a childhood disease.
With more awareness comes, hopefully, increased donations and one day a cure.




PROJECT OVERVIEW
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.






FUNDING
Complete transparency is key for me on this project. I will be very open about all of my expenses and where the money is going.
I have to be very upfront that some of the money raised will be used as living expenses for myself. But this will not be a profit-making endeavour for myself. I will provide a full audit at the end of the project.
I foresee a large portion of the funds to be spent on travel to see actual adult CF patients - since that is the only way to photograph them for the project.
The main driver will be to donate enough the receive the book, as well as having enough left over to donate to the Foundations.


A portion of the money raised will go directly to organizations like CF Canada and The Cystic Fibrosis Foundation (USA).
Other portions of the funds raised will go the production of the project, including the book and prints. Also funds allocated to the marketing of the project.




The main goals:
- CF awareness leading to donation
_ Awareness of issues regarding Adults with CF
- 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


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).


My project focuses only on adults, giving a new face to CF that it hasn’t had in the past.




END GOAL
-First and foremost it is awareness, and hopefully through awareness donations come.
-Money raised through the crowd funding of this project, proceeds go to charity
-Book deal - this is very much a reality, if we get the right people involved. I would like to see this book for sale in shops around the world, with proceeds going to CF research.
-sale of prints, from the book.
-increase in donations




SAFETY GUIDELINES
I’m very aware of the serious considerations of CF patients in the same proximity, and have been in contact with CF Canada as to how I might deal with these situations.
Given that my CF is very mild, there would still be strict precautions in place in dealing with my subjects.
In particular:
- minimizing my actual time with the CF person I am photographing
- I would be gloved and masked at all times for the duration of the photoshoot
- minimum distance of 6 ft. kept at all times as per CFF guidelines.


http://www.cysticfibrosis.ca/about-us/infection-prevention-and-control-policy/




-----------------
 
I

ianpett

New member
"I'm also in Ontario in the Ottawa area. If the idea moves forward you could put the idea out at the CF clinics and they could help you recruit adults from the CF community.
Best of luck!"
(Thats part of the plan)
 
E

eganhouselisa

New member
I would love to be involved also - I am a 36 year old female - I live in Iowa! I think you project is a wonderful idea. Your pictures are amazing also! :)
 
You must log in or register to reply here.
Top