For those have haven't received this exciting bulletin from HDSA, below is
Barbara Boyle's update on the FDA Advisory Committee meeting as promised. WOW
1500 people wrote letters of support and over 200 people from HD families
attended in person! Every one of you who helped, either by attending the FDA
meeting yesterday, submitting a letter for the FDA or even by sharing the
request for support with other HD families, are to be commended! Without your
support, HD wouldn't have been given a face yesterday at the FDA Advisory
Committee hearings!

Thank YOU!
Jean

----- Original Message -----
From: Barbara Boyle
To: jemiller@...
Sent: Friday, December 07, 2007 3:01 PM
Subject: Victory for Tetrabenazine!



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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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