WHY THIS PROJECT IS IMPORTANT
Genetic diseases are more universal than one might think. 1 out of 10 families is affected.
The chronic illness of a child requires a commitment that is with the family every moment of every day. It steals precious time as families battle insurance companies, search for solace, and struggle to manage everyday tasks. But coping with such an illness can also provide moments of profound dignity, grace, transcendence, and joy. This project will provide a record of such moments, illuminating what it means to be a family, as well as what it means to be human, no matter how compromised your existence or how brief your time on earth.
I feel a special kinship with the families I am meeting. My parents lost their first child, Rafi, at age three; he died of Tay-Sachs before I was born. His memory is never far from the family’s collective consciousness, and inspired the work on this project.
The final product will be a book of photographs and text portraying families whose lives have been transformed by the chronic illness of a child.
Here is a sneak peak at some of the images from the project:
RESULTS & BENEFITS
This book will provide a springboard for people with children who are newly diagnosed, a comfort to those already living with children with rare genetic diseases and a lesson about humanity and perspective. Additionally it will provide a list of resources from families who have been diagnosed as to where to turn for pertinent information.
WHY I NEED YOU
For the past year I have put my heart and soul in this project. I have been photographing families mostly in the NY Metro area. However, there are additional families anxious to be photographed throughout the country.
This Kickstarter will support travel costs and location shooting in several areas across the US. Funding will also support a medical consultant to review text, editing, book design and layout. A total of 25 families will be photographed with the hopes of adding more with additional support.
I am incredibly invested in this project but I need your help to achieve my goal.
July 2016 – January 2016: Shooting & Editing
February 2017 - April 2017 Retouching, Design, and Layout
May 2017 - Publishing
September 2017 - Books published and Rewards in your hand!
I am currently working with the following organizations to find participants and spread the word about the project:
- Global Genes HARD (Having A Rare Disease), Best Day Foundation, NORD – National organization for rare disorders, NY Family Magazine, Tay Sachs Foundation, Foundation for Angelman Syndrome Therapeutics among others.
Future funding will be used to create a website where families can find resources and share their stories. The world’s leading rare-disease patient advocacy group, Global Genes, has shown interest in partnering on promotion and/or distribution. A documentary film is also planned for the future.
Risks and challenges
There are always risks with every project, but I have done everything needed to make this book a reality.
As with all photography book projects, inevitable delays can occur. However I can assure you, as a supporter, you will be the first to know through my updates.Learn about accountability on Kickstarter
- (30 days)