domingo, 3 de maio de 2015

Just Breath - Cystic Fibrosis


But it's with a very heavy heart i had to drive back home. On the Friday I was in Florida, I got to meet and photograph one of my biggest supporters for the Portrait project - Parker Cronin. We chatted for a couple of hours, shared a couple of beers and took some outstanding photos. Parker chatted about his life, the support of his wife and family, and his Yankee baseball hat. On that coming Tuesday I had found out Parker had died due to complications with CF. I felt devastated, even now as I type this I feel choked up.  He was an outstanding person, a great supporter of our cause, and for the brief time we spent together, i considered him a friend.
Lets honour him and keep spreading awareness about cystic fibrosis and especially organ donation. Parker was only 32.

If you would like to send via Cheque, please see the information below. Please make cheque payable to:
The CF Project, 57 Kensington Ave. N., Hamilton, Ontario  Canada  L8L7N1

UPDATE: July, 2014Special thank you to Lewis Black, Julius Motal and Simon JoinsonWe have now crossed over the $2,000 mark in donations, thank you to everyone who has generously donated!!  Lots of ways to go still, but hopefully in the next couple of weeks (once some of the other CF-related fundraisers are done) this will get some momentum. Also announced last week is my new role as an Official CF Champion/Ambassador for Canada.
PROJECT OVERVIEWThe goal is to photograph portraits of adults living with Cystic Fibrosis. Beside each of their portraits will be something they have personally written - 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 and signing your donor card. 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 and transplantation  are 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.
I am a portrait and fashion photographer (and art director) based in Hamilton, ON (Canada). I am also 45 years old 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. 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.

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. 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. 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.

Portrait, fashion and Corporate Photographer. Hamilton and Southern Ontario.

Sem comentários:

Enviar um comentário

Related Posts Plugin for WordPress, Blogger...

SIC - DIA MUNDIAL DO NÃO FUMADOR - Testemunho Sandra Campos (Transplantada Pulmonar por FQ)

TV GALIZIA - Testemunho de Sandra Campos - Videos das noticias dos informativos da TVG

SIC - "Programa Companhia das Manhãs" - 14.10.2009

SIC - Fátima Lopes - Entrevista com Sandra Campos e Célia - Junho 2009 (2/2)

SIC - Fatima Lopes - Entrevista com Sandra Camps e Célia - Junho 2009 (1/2)

TVI- Jornal Nacional - Caso chocante de Açoriano que espera Transplante Pulmonar - 2008

SIC - Fátima Lopes Ago.2008 (2/2)

SIC - Fátima Lopes Ago.2008 (1/2)

TV Ciência - Testemunho de Vida - A F.Q e o Transplante Pulmonar

Obrigada a toda a equipa da TV Ciência pela oportunidade de divulgar esta doença rara chamada Fibrose Quistica. Não se falou nos Transplantes Pulmonares mas gostaria de deixar aqui a esperança para todos os que sofrem desta doença que o Transplante Pulmonar pode ser a única salvação numa fase muito avançada e terminal da F.Q.

SIC - Grande Reportagem Fev. 2007 (6/6)

SIC - Grande Reportagem - Fev. 2007 (5/6)

SIC - Grande Reportagem Fev.2007 (4/6)

SIC - Grande Reportagem - Fev.2007 (3/6)

SIC - Grande Reportagem Fev. 2007 (2/6)

SIC - Grande Reportagem Fev 2007 (1/6)

2005 - Sandra Campos - TV Localia (Depois do Transplante) (2/2)

2005 - Sandra Campos - TV Localia - La Corunha (Depois do Transplante) (1/2)

2005 - Sandra Campos - TV Localia La Coruña (antes do Transplante Pulmonar) 2/2

2005 - Sandra Campos - TV Localia La Coruña (antes do Transplante Pulmonar) (1/2)

Preparação para a Grande Reportagem SIC - Fev. 2007

Preparação para a Grande Reportagem SIC - Fev. 2007
Jornalista Susana André e Reporter de Imagem Vitor Quental

Preparação para a Grande Reportagem da Sic - Fev.2007

Preparação para a Grande Reportagem da Sic - Fev.2007
Reporter de Imagem Vitor Quental

La Corunha - Hospital Juan Canalejo

La Corunha - Hospital Juan Canalejo
Hotel de Pacientes - Vários Portugueses salvos por um Transplante Pulmonar

Uma vida é pouco para mim

Uma vida é pouco para mim
O meu lema de vida - Dia do meu Transplante Pulmonar