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Life affirming photos of extraordinary children contending with rare genetic conditions & finding joy & beauty in daily life.
Life affirming photos of extraordinary children contending with rare genetic conditions & finding joy & beauty in daily life.
Life affirming photos of extraordinary children contending with rare genetic conditions & finding joy & beauty in daily life.
201 backers pledged $25,367 to help bring this project to life.

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Kids with Rare Genetic Conditions (A Photo Book)

$25,367

201

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:

Ian doesn't know when he is full.
Ian doesn't know when he is full.

 

Clara can't speak and has tumors on her face.
Clara can't speak and has tumors on her face.

 

Maddy can't walk.
Maddy can't walk.

 

Darus finds comfort in tight spaces.
Darus finds comfort in tight spaces.

 

Wyatt was born with four fingers on one hand.
Wyatt was born with four fingers on one hand.

 

Darus is a loving boy.
Darus is a loving boy.

RECENT PRESS 

NY1 discuss the importance of the project
NY1 discuss the importance of the project

 

Daily Mail Article
Daily Mail Article

 

Cosmopolitan
Cosmopolitan

 

Popsugar
Popsugar

 

New York Family Magazine
New York Family Magazine

 

ABC News
ABC News

 

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.

FUNDING

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.

TIMELINE

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!

PARTNERING OPPORTUNITIES

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 PLANS

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.

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Questions about this project? Check out the FAQ

Support

  1. Select this reward

    Pledge US$ 2 or more About US$ 2.00

    Pledge $2 or more

    Receive an invite to the book launch party in NYC.

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    Pledge $20 or more About $20

    Pledge $20 or more

    Receive a VIP invite to the book launch event in New York City.

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    30 backers
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  3. Select this reward

    Pledge $50 or more About $50

    Pledge $50 or more

    Your name will be listed in the book as a supporter, and you will receive a VIP invite to the book launch event in New York City.

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    38 backers
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  4. Select this reward

    Pledge $100 or more About $100

    Pledge $100 or more

    Receive a copy of the book; Your name will be listed in the book as a supporter, and you will receive a VIP invite to the book launch event in New York City.

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    61 backers
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  5. Select this reward

    Pledge $250 or more About $250

    Pledge $250 or more

    Receive a signed copy of the book; A Tote Bag, and your name will be listed in the book as a supporter, and you will receive a VIP invite to the book launch event in New York City.

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    16 backers
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  6. Select this reward

    Pledge $500 or more About $500

    Pledge $500 or more

    Receive a signed copy of the book, a tote bag, print of your choice from the book, professionally mounted on metal – 8x12; Your name will be listed in the book as a supporter, and you will receive a VIP invite to the book launch event in New York City.

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  7. Select this reward

    Pledge $1,000 or more About $1,000

    Pledge $1000 or more

    Receive a speaking engagement and book signing in NY by Karen Haberberg, a signed copy of the book, a tote bag, a print of your choice from the book, professionally mounted on metal – 8x12; Your name will be listed in the book as a supporter, and you will receive a VIP invite to the book launch event in New York City.

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  8. Select this reward

    Pledge $2,000 or more About $2,000

    Pledge $2000 or more

    Receive a speaking engagement and book signing in NY by Karen Haberberg, a signed copy of the book, a tote bag, a print of your choice from the book, professionally mounted on metal – 20x30; Your name will be listed in the book as a supporter, and you will receive a VIP invite to the book launch event in New York City.

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Funding period

- (30 days)