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Re: Tetrabenazine - FDA Review - December 6, 2007 - ACT NOW!

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  • Scott
    This could be HUGE! My family is raising money to send a California cousin that was in on the trial. He had Night and Day differences when using the drug.
    Message 1 of 4 , Nov 1, 2007
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      This could be HUGE! My family is raising money to send a California
      cousin that was in on the trial. He had Night and Day differences
      when using the drug. Halted Chorea so much he could swallow and
      completely stopped dancing. He now gets his much needed "fix" from
      Canada.

      My sister is badly in need of this drug. She drove her final mile
      last week and needs to show improvement in order to maintain her
      current independence. The fact that the FDA has not approved this
      drug is a poor reflection on the rights of terminally ill patients in
      this country. Quality of life goes a long way to reducing the
      suffering and anguish of HD. ...I know preaching to the choir, but I
      wanted to take this opportunity to reach those that may be sitting on
      the fence on going or not. Especially to our East Coast brothers and
      sisters that may be better situated for travel.


      --- In huntingtonsdiseasesupportclub@yahoogroups.com, "Jean E.
      Miller" <jemiller@...> wrote:
      >
      > The below message from Nancy Wexler was forwarded to me. The FDA
      will be reviewing Tetrabenazine's safety on December 6, 2007. Nancy
      is urging any patients with Huntington's disease, suffering from
      chorea, or members of their family to speak to the potential for this
      much needed use of tetrabenazine. She would like to have as many
      people come as possible to show your support! You can speak at the
      open hearing during the advisory committee, which will take place
      from 1-2pm on December 6, 2007 in Beltsville, MD (just outside of
      Washington, DC). See below for details who to advise if you plan on
      attending. The deadline is November 7th.
      >
      > From: nancywexler@...
      > To: Jim Pollard
      > Sent: Thursday, October 25, 2007 3:05 PM
      > Subject: Tetrabenazine - FDA Review - December 6, 2007 - ACT NOW!
      >
      >
      > Dear Friends,
      >
      > YOUR HELP IS NEEDED URGENTLY!!
      >
      > The opportunity has finally arrived to make your voices heard in
      support of tetrabenazine for use with chorea associated with
      Huntington's disease!
      >
      > The FDA has asked the Peripheral and Central Nervous System (PCNS)
      Advisory Committee, a group of outside experts, to review
      tetrabenazine. While the FDA has acknowledged that tetrabenazine
      seems to work, they are questioning whether it is safe for patients
      and whether the risks outweigh the benefits.
      >
      > During the PCNS advisory committee meeting on December 6, 2007,
      Prestwick Pharmaceuticals will present information to the FDA
      regarding tetrabenazine. There will also be an open session from 1-
      2pm in which the advisory committee and the FDA will listen to
      testimony from the public. This is the Huntington's disease
      community's opportunity to make our feelings known!
      >
      > During the public session, I plan to speak about my experience with
      Huntington's disease and why I believe tetrabenazine can offer
      Huntington's disease patients a desperately needed treatment for
      their chorea. Patients in clinical trials as well as patients in
      other countries where it is approved have had success in treating
      their chorea. There are currently no approved treatments in the
      United States for chorea associated with Huntington's disease. We
      need the PCNS panel of experts to advise the FDA to approve
      tetrabenazine as a safe and effective treatment for chorea associated
      with Huntington's disease. Huntington's patients, in consultation
      with their families and healthcare providers, should be able to have
      the option to try tetrabenazine and see if it works for them.
      >
      > As we all know, chorea is not simply a cosmetic issue. Chorea is
      incredibly incapacitating for patients and is a major cause of
      morbidity and mortality for people suffering from Huntington's. The
      panelists that will be advising the FDA need to hear from you about
      your experience with chorea associated with Huntington's disease.
      >
      > YOU CAN MAKE A DIFFERENCE!
      > You can speak at the open hearing during the advisory committee,
      which will take place from 1-2pm on December 6, 2007 in Beltsville,
      MD (just outside of Washington, DC). We need patients suffering from
      chorea to speak to the potential for this much needed use of
      tetrabenazine. We would like to have as many people come as possible
      to show your support!
      >
      > DETAILS OF THE MEETING
      > Date: December 6, 2007
      > Place: Sheraton College Park Hotel - The Ballroom
      > 4095 Powder Mill Road
      > Beltsville, Maryland
      > Phone (301) 937-4422 · Fax (301) 937-4455
      > Time: 8am-5pm (ET)
      > 1-2pm (ET) - Open Session to hear testimony from the public
      >
      > WHO TO CONTACT IF YOU WILL ATTEND
      > To speak at the open hearing during the PCNS advisory committee
      meeting, please email the following information by November 7 to
      > Darrell Lyons - eMail: Darrell.lyons@...
      > Copy: Nancy Wexler Email: wexlern@...
      >
      > Include the following in your message:
      > - A brief statement of what you would like to present
      > - Your name and address
      > - How long you would like to speak
      >
      > If you would prefer to provide a written statement to the panel of
      experts, you can submit your statement to
      > Darrell Lyons - eMail: Darrell.lyons@...
      > by November 21.
      >
      > Include the following in your letter:
      > It is important that you-the caretaker, family member or patient-
      convey to the committee either in person or in your letter:
      > - how devastating chorea is for you or for your relatives who have
      Huntington's disease;
      > - why you would want the option to try a new treatment like
      tetrabenazine;
      > - how tetrabenazine has helped your chorea; and/or
      > - how important it is to have the FDA Committee recommend approval
      of tetrabenazine.
      >
      > If you plan to speak at the hearing, please let us know so we can
      help coordinate with all the speakers. Please contact me at
      wexlern@... or 212.543.5667.
      >
      > With many thanks,
      > Nancy S. Wexler, Ph.D.
      > President, Hereditary Disease Foundation
      > Higgins Professor of Neuropsychology Columbia University
      >
    • Lynn
      I pray that this gets passed. This drug could be so helpful for those that are really suffering with the symptoms. It sounds as if that we have finally had a
      Message 2 of 4 , Nov 1, 2007
      • 0 Attachment
        I pray that this gets passed. This drug could be so helpful for those that
        are really suffering with the symptoms. It sounds as if that we have finally
        had a breakthrough in reasearch and medical development, what a shame it
        would be if others couldn't get access to it
        Lynn
        My groups:
        http://pets.groups.yahoo.com/group/dachsie_crazy/
        http://health.groups.yahoo.com/group/Huntingtons_disease_online/
        ----- Original Message -----
        From: "Scott" <scott_v1963@...>
        To: <huntingtonsdiseasesupportclub@yahoogroups.com>
        Sent: Thursday, November 01, 2007 7:55 AM
        Subject: [Huntingtons Disease Support Club] Re: Tetrabenazine - FDA Review -
        December 6, 2007 - ACT NOW!


        This could be HUGE! My family is raising money to send a California
        cousin that was in on the trial. He had Night and Day differences
        when using the drug. Halted Chorea so much he could swallow and
        completely stopped dancing. He now gets his much needed "fix" from
        Canada.

        My sister is badly in need of this drug. She drove her final mile
        last week and needs to show improvement in order to maintain her
        current independence. The fact that the FDA has not approved this
        drug is a poor reflection on the rights of terminally ill patients in
        this country. Quality of life goes a long way to reducing the
        suffering and anguish of HD. ...I know preaching to the choir, but I
        wanted to take this opportunity to reach those that may be sitting on
        the fence on going or not. Especially to our East Coast brothers and
        sisters that may be better situated for travel.


        --- In huntingtonsdiseasesupportclub@yahoogroups.com, "Jean E.
        Miller" <jemiller@...> wrote:
        >
        > The below message from Nancy Wexler was forwarded to me. The FDA
        will be reviewing Tetrabenazine's safety on December 6, 2007. Nancy
        is urging any patients with Huntington's disease, suffering from
        chorea, or members of their family to speak to the potential for this
        much needed use of tetrabenazine. She would like to have as many
        people come as possible to show your support! You can speak at the
        open hearing during the advisory committee, which will take place
        from 1-2pm on December 6, 2007 in Beltsville, MD (just outside of
        Washington, DC). See below for details who to advise if you plan on
        attending. The deadline is November 7th.
        >
        > From: nancywexler@...
        > To: Jim Pollard
        > Sent: Thursday, October 25, 2007 3:05 PM
        > Subject: Tetrabenazine - FDA Review - December 6, 2007 - ACT NOW!
        >
        >
        > Dear Friends,
        >
        > YOUR HELP IS NEEDED URGENTLY!!
        >
        > The opportunity has finally arrived to make your voices heard in
        support of tetrabenazine for use with chorea associated with
        Huntington's disease!
        >
        > The FDA has asked the Peripheral and Central Nervous System (PCNS)
        Advisory Committee, a group of outside experts, to review
        tetrabenazine. While the FDA has acknowledged that tetrabenazine
        seems to work, they are questioning whether it is safe for patients
        and whether the risks outweigh the benefits.
        >
        > During the PCNS advisory committee meeting on December 6, 2007,
        Prestwick Pharmaceuticals will present information to the FDA
        regarding tetrabenazine. There will also be an open session from 1-
        2pm in which the advisory committee and the FDA will listen to
        testimony from the public. This is the Huntington's disease
        community's opportunity to make our feelings known!
        >
        > During the public session, I plan to speak about my experience with
        Huntington's disease and why I believe tetrabenazine can offer
        Huntington's disease patients a desperately needed treatment for
        their chorea. Patients in clinical trials as well as patients in
        other countries where it is approved have had success in treating
        their chorea. There are currently no approved treatments in the
        United States for chorea associated with Huntington's disease. We
        need the PCNS panel of experts to advise the FDA to approve
        tetrabenazine as a safe and effective treatment for chorea associated
        with Huntington's disease. Huntington's patients, in consultation
        with their families and healthcare providers, should be able to have
        the option to try tetrabenazine and see if it works for them.
        >
        > As we all know, chorea is not simply a cosmetic issue. Chorea is
        incredibly incapacitating for patients and is a major cause of
        morbidity and mortality for people suffering from Huntington's. The
        panelists that will be advising the FDA need to hear from you about
        your experience with chorea associated with Huntington's disease.
        >
        > YOU CAN MAKE A DIFFERENCE!
        > You can speak at the open hearing during the advisory committee,
        which will take place from 1-2pm on December 6, 2007 in Beltsville,
        MD (just outside of Washington, DC). We need patients suffering from
        chorea to speak to the potential for this much needed use of
        tetrabenazine. We would like to have as many people come as possible
        to show your support!
        >
        > DETAILS OF THE MEETING
        > Date: December 6, 2007
        > Place: Sheraton College Park Hotel - The Ballroom
        > 4095 Powder Mill Road
        > Beltsville, Maryland
        > Phone (301) 937-4422 · Fax (301) 937-4455
        > Time: 8am-5pm (ET)
        > 1-2pm (ET) - Open Session to hear testimony from the public
        >
        > WHO TO CONTACT IF YOU WILL ATTEND
        > To speak at the open hearing during the PCNS advisory committee
        meeting, please email the following information by November 7 to
        > Darrell Lyons - eMail: Darrell.lyons@...
        > Copy: Nancy Wexler Email: wexlern@...
        >
        > Include the following in your message:
        > - A brief statement of what you would like to present
        > - Your name and address
        > - How long you would like to speak
        >
        > If you would prefer to provide a written statement to the panel of
        experts, you can submit your statement to
        > Darrell Lyons - eMail: Darrell.lyons@...
        > by November 21.
        >
        > Include the following in your letter:
        > It is important that you-the caretaker, family member or patient-
        convey to the committee either in person or in your letter:
        > - how devastating chorea is for you or for your relatives who have
        Huntington's disease;
        > - why you would want the option to try a new treatment like
        tetrabenazine;
        > - how tetrabenazine has helped your chorea; and/or
        > - how important it is to have the FDA Committee recommend approval
        of tetrabenazine.
        >
        > If you plan to speak at the hearing, please let us know so we can
        help coordinate with all the speakers. Please contact me at
        wexlern@... or 212.543.5667.
        >
        > With many thanks,
        > Nancy S. Wexler, Ph.D.
        > President, Hereditary Disease Foundation
        > Higgins Professor of Neuropsychology Columbia University
        >





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