Photographer and local mom Karen Haberberg–one of our regular contributors–has a family connection to the genetic condition Tay Sachs Disease (she has a brother who died of Tay Sachs before she was born) and has been using her passion and skills as a photographer to help raise awareness and change lives about such diseases.
Karen just launched a Kickstarter campaign to raise money to complete an endeavor she has embarked on over the past year called Project Believe–a photography project centered around families with a child with a rare genetic disease. As she states on her Kickstarter page: “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.” She also plans to create a resource website and documentary film on this topic.
Karen’s Kickstarter goal is to raise at least $25,000 in donation pledges by July 24, 2016.
Here are some basic facts about rare diseases:
- 80 percent of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
- One out of 10 families is affected by a genetic disease
- Approximately 50 percent of the people affected by rare diseases are children
- 30 percent of children with rare disease will not live to see their 5th birthday
- Rare diseases are responsible for 35 percent of deaths in the first year of life
- In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group
We here at New York Family are happy to help her spread her message and tell the stories she hopes to tell. See the video below to learn more about Project Believe and Karen’s ongoing work with inspiring families and children.
Finally, if you know of families affected by rare genetic diseases who may want to participate in this project, please to contact Karen Haberberg at firstname.lastname@example.org and share this post via your social media channels.