Cystic fibrosis is a congenital, hereditary metabolic disorder that causes extremely viscous mucus to build up in the organs. A genetic defect in the CFTR gene disrupts the salt and water balance of the body's cells. Secretion-producing glands release too little water, causing bodily secretions to become sticky and thick rather than thin and fluid.
Alexandrena Parker photographed the images shown here on gosee.news for Vertex.
This disease is a cause close to Alexandrena Parker’s heart, as she is personally affected by it. The condition is inherited in an autosomal recessive manner, meaning the child must have received the genetic defect from both parents. While there is currently no cure, life expectancy and quality of life for patients have improved significantly in recent decades thanks to modern therapies—such as inhalation therapy, respiratory physiotherapy, special enzymes, and novel medications like CFTR modulators.
"The project is being used as a live exhibition and is traveling to Australian Parliament House in Canberra for an event with Australian Prime Minister next month. Alexandrena will be going up to do a speech to open the exhibition." Emeis Deubel.
"Very proud to finally share ‘There’s More to the Story’, one of the most personal and meaningful projects I’ve ever had the privilege of creating. Commissioned by Vertex Pharmaceuticals, in collaboration with Cystic Fibrosis Australia, the project tells the stories of six people living with cystic fibrosis, exploring how their lives have changed significantly in recent years, and the new and often unexpected challenges that have come with that change.
This project is deeply personal to me. CF has shaped so much of my own life, and being given the opportunity to turn my camera towards a community I’m part of and to tell these stories with honesty and nuance has meant more than I can really put into words. Many people have heard of cystic fibrosis, but far fewer understand the reality of living with it. And while that reality is changing, there is still so much more to the story." Alexandrena Parker.
Vertex, a US-based biopharmaceutical company headquartered in Boston, is best known for groundbreaking cystic fibrosis treatments; it also researches therapies for severe genetic diseases, pain, and diabetes.
The company was founded in 1989 in Cambridge, Massachusetts, by chemist Joshua Boger—formerly head of research at the pharmaceutical company Merck—and investor Kevin J. Kinsella. Today, it maintains its global headquarters in Boston’s Innovation District and its European headquarters in London, UK, alongside research and development sites and offices worldwide.
Photographer Alexandrena Parker is represented by the Berlin-based agency EMEIS DEUBEL.
GoSee : vrtx.com
