Provide names of other journalists involved.
Julie Steenhuysen
List date(s) this work was published or aired.
31-May-12
Provide a brief synopsis of the story or stories, including any significant findings.
The story explores progress in developing treatments for autism specifically designed to correct brain wiring problems common to many forms of the disease, raising hope for the first real improvements in a condition that affects one in 88 children in the United States. Although scientists say as many as 1,000 genes could be at play in autism, research is now focused on treating networks in the brain that go awry in many forms of autism. My story focuses on children testing a drug by Seaside Therapeutics, which was first developed to treat children with Fragile X, a condition caused by a rare genetic mutation, but is also being tested in children with autism. As part of my research, I spoke with scientists at leading universities and drug companies about the prospects for these drugs. But I tell the story through the lens of families whose children have taken Seaside’s drug and are seeing fairly remarkable changes. I also took pains not to raise false hope, and made an effort to include voices of caution.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I did rely on some studies published in medical journals
Explain types of human sources used.
The bulk of this story came from tons of interviews with doctors, patients, advocacy groups, company researchers and scientists working on these drugs.
Results:
Interviewed about the story on WTOP, an NPR affiliate in Washington. On June 19, 2012, Swiss drugmaker Roche announced a partnership with privately held Seaside Therapeutics. As part of the deal, Seaside will license its drug patents to Roche, which will commercialize the drug arbaclofen, about which the story is written. On Sept. 19, the editors of FierceBiotech named Seaside as one of the Fierce 15 for 2012, designating it as one of the most promising private companies in the biotechnology industry.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
n/a
Advice to other journalists planning a similar story or project.
The autism community is very tight knit, and I soon discovered that patients know each other, or know about each other. For example, Jack Balter’s family had heard about the progress Parker Roos was having through support groups and happened to mention it to me independently. These families are very proactive, and really well informed of the science. I think any reporter looking to get the full story should spend some time with a family, as I did. It really helps give color to the story and build trust.