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Congratulations Everyone!

Yesterday was a major victory for everyone affected by Huntington’s Disease. An Advisory Committee to the Food and Drug Administration (FDA) voted unanimously to recommend approval of Tetrabenazine!  If passed by the FDA, this will be the very first drug in the U.S. specifically approved for people with HD.

This was a true milestone for the HDSA Community. It was your testimony, your written statements, your attendance and your support that made it clear to the committee members that they should vote their approval of this drug.

We were elated to see more than 200 of our family members come out to Beltsville for the hearing, and that at certain points during the day the ballroom was standing room only.  I would personally like to thank everyone that attended, as well as those throughout the country that took the time to add your names to our letter of support.  In just over a week we collected more than 1,500 affirmations that were presented to the committee, showing that the support for Tetrabenazine yesterday reached much farther than the back of the crowded ballroom.

Most of the members on the Advisory Committee had little or no personal experience with HD before this hearing.  The presence of so many supporters, and the knowledge that for every person at the hearing there were hundreds more wishing they could be present, sent a strong message about the need for HD treatments and the determination of our community to see that need met.

While the Advisory Committee ruling is not the final say in approving this drug, this is a big step forward.  Though the FDA is not required to follow the advice of its advisory committees, it generally does.  As one of the hearing attendees said, “we haven’t crossed the finish line yet,” but I am pleased to say that we’re taking great strides in getting there.

This was a great example of how working as a community we can accomplish our goals. 

Thank you for a great Job!

Sincerely,

Barbara T. Boyle
National Executive Director/CEO

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