Thursday, April 18, 2024

Addi & Cassi Featured in an Incredible Wall Street Journal Story

November 15, 2013 by  
Filed under Featured Content, Featured Stories

Pulitzer prize winning journalist Amy Marcus spent 6 years following Addi & Cassi, their doctors, and the science community on our journey to find treatments.  In an unprecedented 10 chapter online e-book, the Wall Street Journal has published this remarkable story.

The story (without the amazing videos, audioclips) is featured on the front page of the print version today including an amazing 2 page spread in the center of section A.

What the Wall Street Journal has done with technology is also absolutely fantastic and unprecedented in so many ways.  The story is told with beautiful “images” that are actually moving videos.  This project was an amazing effort by literally dozens of dedicated people as the credits and footnotes clearly indicate.

We are so fortunate to have the support of so many scientists, doctors, families, the NIH, the FDA and our friends at Johnson & Johnson.  As the story so beautifully illustrates, the effort to bring treatments to all NPC patients is indeed an effort of our entire community working together.

We would like to especially thank Amy Marcus for her compassionate and compelling treatment of this complex subject.


9 Responses to “Addi & Cassi Featured in an Incredible Wall Street Journal Story”
  1. Hi, sometimes I get a 500 site error when I arrive at this site. Just a heads up, regards

  2. Hong Proksch says:

    Hi, frequently I get a 404 message when I visit this page. I figured you would like to know.

  3. Kathy Jones says:

    Dr. Jennifer Doudna at Birkley in California has discovered a process to alter genes. Wonder if her lab could try altering genes to help Neiman Pick kids?

  4. David King says:

    What a pleasure feeling to be published in wall street journal story. Many touching stories may featured and they all worth with it so that many people may know each story behind those people.

  5. Tess says:

    You can also hear Amy Marcus on NPR on the Leonard Lopate show here with a link to the 10 Page Article:

    New York’s WNYC public radio station. So relieved that great efforts are being made to get the word out about this important research.
    Love to all. Always praying for you all. Tess

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