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News Report: Parents Say “Miracle Drug” Taken Away After Study Ends

By NFXF|2020-07-04T14:02:38-04:00Jul 26, 2013|Seaside STX209|

Video clip from local news station covering a family who participated in a study that later ended and they want to get their hands on the drug that they called a miracle drug.

The STX209 Saga and Beyond—What We’ve Done, What We’re Doing and What’s the Plan

By NFXF|2013-07-16T17:06:19-04:00Jul 16, 2013|2013, Advocacy, Advocacy Day, Seaside STX209|

(c) Photo: Laura Gilmore For more than 10 years the NFXF has been participating in the life-sized chess game that is the federal budget. Even before the decision was made to bring the [...]

A Bump in the Drug Therapy Road: What Can Advocates Do?

By NFXF|2013-06-18T16:27:33-04:00Jun 18, 2013|Advocacy, Seaside STX209|

Note: Just before I wrote this article, a group of parents that Margaret Mead could have easily been describing when she penned her most famous quote ("Never doubt that a small group of committed people [...]

  • Elizabeth Berry-Kravis and Craig Erickson on conference panel

Dr. Elizabeth Berry-Kravis on the Challenges Inherent in a Clinical Trial

By NFXF|2022-03-03T11:47:25-05:00Jun 10, 2013|Keeping You Informed, Seaside STX209|

We asked Dr. Elizabeth Berry-Kravis to comment on the challenges inherent in a clinical trial.

NY Times : An Experimental Drug’s Bitter End

By NFXF|2013-06-07T15:18:51-04:00Jun 7, 2013|Keeping You Informed, Seaside STX209|

Photo by Daniel Acker for the New York Times On the front page of the Business section of the June 7 New York Times was an article regarding Seaside Therapeutics' ending of the [...]

An Update from Seaside 5/22

By NFXF|2013-05-23T08:35:28-04:00May 23, 2013|Keeping You Informed, Seaside STX209|

Yesterday we received the following messages from Paul Wang, Vice President, Clinical & Medical Affairs at Seaside Therapeutics, Inc. Dear all - I wanted to let you know about a letter that we just posted [...]

Open Letter to the FX Community about Seaside Arbaclofen (STX209)

By NFXF|2013-05-18T09:01:37-04:00May 18, 2013|News Reports and Commentaries, Seaside STX209|

To our Fragile X family: Many of you by now have heard the news that Seaside Therapeutics has decided to end their extension of the trial medication known as Arbaclofen (STX209). The NFXF Board of [...]

Seaside Therapeutics Announces End of Arbaclofen (STX209) Extension Study

By NFXF|2013-05-16T11:03:00-04:00May 16, 2013|Keeping You Informed, News Reports and Commentaries, Seaside STX209|

Late yesterday afternoon the NFXF, along with all of the study locations, was contacted by Seaside Therapeutics and informed that the “Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of [...]

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