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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 Directors and all those within the National Fragile X Foundation share your heartfelt concern of the impact this decision will have on your family or of those you may know.
While this may be a difficult time for many, it is important for us to remember there has never been more of a reason to remain optimistic. There are many new medication targets under investigation and researchers are continuing their ground-breaking work toward translating these potential treatments to individuals with fragile X syndrome in the future. In addition, at this time, we are still aware that Seaside plans to pursue FDA approval pending the results of the placebo-controlled studies.
We understand that you still have many questions. To provide you with accurate and timely information, we have developed some Frequently Asked Questions and Answers to help you interpret what has happened and make the best choices for your loved ones.
There are many misconceptions about Seaside’s decision circulating on social media and we encourage everyone to consult their physicians or study coordinator to discuss further options.
As more information becomes available, we will update this site. We will also initiate discussions with relevant parties and gather appropriate data to keep everyone properly informed.
Until more is known, please review the FAQs. We have also created a comments section where you can share your thoughts and concerns with us. We will continue to address the most frequently asked questions moving forward.
NFXF Board of Directors
NFXF Executive Director