About the DADA2 Foundation

Our Vision

To see a world cured of DADA2.

Our Mission

The DADA2 Foundation aims to find innovative ways for patients & families, physicians, researchers, non-profits, government, academia, biotech and pharma, to work together to accelerate research into the rare disease Deficiency of Adenosine Deaminase 2, to raise awareness about the condition, and to improve the lives of DADA2 patients around the world. 

Our Strategy

We feel that establishing our large network of patients and families, physicians and researches is the secret sauce to moving fast as possible toward a cure for DADA2 and improving the lives of DADA2 patients around the world.

Key tenets to our strategy today include:

  • Convening
  • Curiosity
  • Collaboration
  • Consensus
  • Communication

 

Most recently, we published the Foundation's first-ever Momentum Report, which outlines our goals for 2022 and 2023.  We are thrilled to report that several of these initiatives are either complete or well underway.

Our History

The DADA2 Foundation, like so many patient-driven rare disease organizations, is the result of two passionate parents searching for a cure for their children. In Nashville, Tennessee, U.S.A, the Chambers family had pursued an answer to their first child's symptoms which persisted for nearly 15 years, only to be followed by their second child beginning to show signs. Doctors and specialists could not determine the cause until two papers were published in 2014 in the New England Journal of Medicine. A post on a closed blog for immunologists caused one doctor from Finland to contact the family and propose DADA2 as the possible answer.  Armed with this isight and the two journal articles, the diagnosis was made within months.  Their persistence focused on their two children set off a chain reaction that eventually left to the establishment of the DADA2 Foundation.

The timeline below tells the story of gatherings publications, accomplishments, and what we're looking forward to. You can also watch the video at the end of the timeline or download a PDF of this history.

The DADA2 Foundation Team

Staff

Chip Chambers Headshot

Chip Chambers, M.D.

Founder & President

mary-k

Mary Makley

Executive Director

lex

Lex Cowsert, Ph.D.

Chief Scientific Officer

Kristen-hayner

Kristen Hayner, M.Ed.

Communications & Strategic Initiatives

bkling

Bridget Kling, M.A.

Project Coordinator

julie-williams

Julie Williams, M.S.

Certified Genetic Counselor – Research Engagement Director

Board

Chip Chambers Headshot

Chip Chambers

President

Katherine Bell

Katherine Bell

VP & Secretary

Headshot_PlaceHolder

Heather Peterson

Treasurer

Senior Advisor

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Scientific Advisory Board

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Get to know our Scientific Advisory Board.  These men and women represent institutions around the globe, as well as dozens of scientists and researchers who are studying DADA2 in their local labs.  Their dedication to this disease is what makes us able to take strides in finding treatments and a cure. We are grateful for their efforts.