WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

NEED YOUR HELP TO GET TETRABENAZINE APPROVED BY THE FDA

Sent: Wednesday, November 28, 2007 5:40 PM

Subject: WE NEED YOUR HELP TO GET TETRABENAZINE APPROVED BY THE FDA

Dear Friends,

As you may have heard from previous emails, the FDA is considering whether or not to approve tetrabenazine. They’re meeting on December 6 in Beltsville, Maryland, just outside of Washington, DC:

Details of the meeting:

Date:     December 6, 2007
Place:     Sheraton College Park Hotel - The Ballroom
4095 Powder Mill Road
Beltsville, Maryland
Time:     8am-5pm (ET)
1-2pm (ET) - Open Session to hear testimony from the public

IT’S CRUCIAL THAT WE HAVE THIS DRUG!!!

No one doubts its efficacy and it is also quite safe, despite the FDA’s concerns. It’s been used successfully for 40 years in Europe. WE NEED THIS DRUG!!!!!!

The problem is that the FDA needs to know we’re interested and that HD families are willing to go to the hearing and be in the room.

Although they have already selected 10 people to testify during the oral presentations, there are 300 seats in the room and only 20 people have signed up to appear!! The FDA will think we don’t care about the drug since it is not worth it to us to show up!!

Many members of the FDA may have never seen chorea, so if anyone with chorea were able to attend, it would really be extraordinarily helpful.

The FDA thinks that chorea is cosmetic and we need, by our presence, to show that it’s not. We desperately need your help to fill those 300 chairs!!!

The FDA needs to know we’re watching what they do, that it matters to us. After all this time, we cannot lose the battle because we couldn’t be bothered to show up!!

I know many of you are working, but this is one time it’s worth it if you possibly can to take the day off and vote with your feet.

Please contact me if you have any questions - 212.543.5667 or wexlern@pi.cpmc.columbia.edu.

Blair Schoeb is helping to make arrangements. She is coordinating with all of the speakers, people writing letters, and those wishing to attend the hearing. Please call her - 760.365.1857 or email her - bschoeb@wcpglobal.com.

Also, please let us know your plans. If you can come, that’s best. Please also be in touch if you’re talking to other people about going.

All best wishes,
Nancy