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I don't think all the support groups or Chapters were notified of the below request from HDSA!
HDSA is looking for personal experiences of people with HD who have chorea on how it affects your life. Your input will help support HDSA
presentations to the FDA. Input from other family members would also be appreciated, but the primary emphasis is on how chorea affects the person
with HD. The original due date was February 23, however HDSA has extended this due date and would appreciate you're taking a few minutes of your time to send Deb Lovecky, at HDSA, your letter or email on how chorea affects you.
Below is the HDSA request. It's also attached for sharing with HD family members who do not have email.
Let's all support this important project if you can!
Love
Jean
From: Deb Lovecky <dlovecky@...>
Sent: Mar 21, 2007 2:22 PM
Subject: RE: Living with Chorea
HDSA is still accepting letters. We have not been given a date for the FDA
Advisory Committee hearing as yet. We are particularly interested in how
chorea has affected the person with HD - rather than how chorea has affected
the family or caregiver.
Best regards
Deb
Subject: HDSA Request for Your Personal Experience Having Chorea
Action: Send a letter/email to HDSA describing your personal experience living with chorea.
Due Date: February 23, 2007 (still accepting letters as of March 21, 2007)
Reference: Update on XENAZINE (Tetrabenazine)
Not everyone with HD develops chorea; however, for those who do, its impact
can be significant. Because so few people outside of the HD community are
familiar with chorea, HDSA would like to raise awareness of chorea and the
burden it imposes in HD. We would like to hear from patients, families, and
caregivers about how chorea impacts your lives.
Please send us a letter or e-mail describing your personal experience living
with chorea by February 23, 2007. These letters will provide important
background as HDSA prepares to represent HD families at upcoming medical and
scientific forums where chorea will be discussed.
Please send your communications via letter or email to:
Attention: Deb Lovecky
HDSA
505 Eighth Avenue
New York, NY 10018
Email: Dlovecky@...
Your personal stories will be essential in raising awareness about this
debilitating condition. Please know that your name will not be used if you
prefer to remain anonymous. Just let us know in your letter or email. You
will then be identified only by the city and state in which you reside.
Your letter will help provide important background as HDSA prepares to
represent HD families at upcoming medical and scientific forums where chorea
will be discussed. See below.
BACKGROUND:
Update On XENAZINE (Tetrabenazine): A Potential Treatment For Chorea
Chorea, a condition characterized by involuntary, unpredictable, and
fleeting movements that occur all over the body, is typically the first and
most noticeable symptom of Huntington's Disease (HD). Chorea is reportedly
present in up to 90% of individuals with HD, but manifests itself
differently, depending on the stage of the person's underlying disease.
Individuals with chorea may face a risk of falls or injury from their
uncontrolled movements. Therapies to treat chorea associated with HD are
urgently needed.
Many of you are aware that tetrabenazine, poised to be the first drug in the
U.S. developed for treatment of chorea associated with HD, is currently in
the U.S. Food and Drug Administration (FDA) regulatory review process.
Prestwick Pharmaceuticals, Inc., the company developing tetrabenazine in the
U.S., is currently working with a team of outside medical experts to compile
additional information requested by the FDA to fully complete its review
process.
After submitting this additional information to the FDA, Prestwick expects
to have the opportunity to present a summary of tetrabenazine's safety and
effectiveness at an FDA Peripheral and Central Nervous System Advisory
Committee meeting. The FDA has not yet set a date for this meeting. This
committee, comprised primarily of outside medical and scientific experts,
will review the product in a public meeting and give advice to assist the
FDA in evaluating the drug. Reviews by advisory committees are typical for
new products, such as tetrabenazine, that may treat conditions, which are
uncommon, or for which there are no treatments available.
Prestwick is anxious to make tetrabenazine available to patients with chorea
associated with HD and is working closely with the FDA to supply all of the
information required for the FDA reviews.
Your letters can help!
Thank you.
Deb Lovecky
HDSA is looking for personal experiences of people with HD who have chorea on how it affects your life. Your input will help support HDSA
presentations to the FDA. Input from other family members would also be appreciated, but the primary emphasis is on how chorea affects the person
with HD. The original due date was February 23, however HDSA has extended this due date and would appreciate you're taking a few minutes of your time to send Deb Lovecky, at HDSA, your letter or email on how chorea affects you.
Below is the HDSA request. It's also attached for sharing with HD family members who do not have email.
Let's all support this important project if you can!
Love
Jean
From: Deb Lovecky <dlovecky@...>
Sent: Mar 21, 2007 2:22 PM
Subject: RE: Living with Chorea
HDSA is still accepting letters. We have not been given a date for the FDA
Advisory Committee hearing as yet. We are particularly interested in how
chorea has affected the person with HD - rather than how chorea has affected
the family or caregiver.
Best regards
Deb
Subject: HDSA Request for Your Personal Experience Having Chorea
Action: Send a letter/email to HDSA describing your personal experience living with chorea.
Due Date: February 23, 2007 (still accepting letters as of March 21, 2007)
Reference: Update on XENAZINE (Tetrabenazine)
Not everyone with HD develops chorea; however, for those who do, its impact
can be significant. Because so few people outside of the HD community are
familiar with chorea, HDSA would like to raise awareness of chorea and the
burden it imposes in HD. We would like to hear from patients, families, and
caregivers about how chorea impacts your lives.
Please send us a letter or e-mail describing your personal experience living
with chorea by February 23, 2007. These letters will provide important
background as HDSA prepares to represent HD families at upcoming medical and
scientific forums where chorea will be discussed.
Please send your communications via letter or email to:
Attention: Deb Lovecky
HDSA
505 Eighth Avenue
New York, NY 10018
Email: Dlovecky@...
Your personal stories will be essential in raising awareness about this
debilitating condition. Please know that your name will not be used if you
prefer to remain anonymous. Just let us know in your letter or email. You
will then be identified only by the city and state in which you reside.
Your letter will help provide important background as HDSA prepares to
represent HD families at upcoming medical and scientific forums where chorea
will be discussed. See below.
BACKGROUND:
Update On XENAZINE (Tetrabenazine): A Potential Treatment For Chorea
Chorea, a condition characterized by involuntary, unpredictable, and
fleeting movements that occur all over the body, is typically the first and
most noticeable symptom of Huntington's Disease (HD). Chorea is reportedly
present in up to 90% of individuals with HD, but manifests itself
differently, depending on the stage of the person's underlying disease.
Individuals with chorea may face a risk of falls or injury from their
uncontrolled movements. Therapies to treat chorea associated with HD are
urgently needed.
Many of you are aware that tetrabenazine, poised to be the first drug in the
U.S. developed for treatment of chorea associated with HD, is currently in
the U.S. Food and Drug Administration (FDA) regulatory review process.
Prestwick Pharmaceuticals, Inc., the company developing tetrabenazine in the
U.S., is currently working with a team of outside medical experts to compile
additional information requested by the FDA to fully complete its review
process.
After submitting this additional information to the FDA, Prestwick expects
to have the opportunity to present a summary of tetrabenazine's safety and
effectiveness at an FDA Peripheral and Central Nervous System Advisory
Committee meeting. The FDA has not yet set a date for this meeting. This
committee, comprised primarily of outside medical and scientific experts,
will review the product in a public meeting and give advice to assist the
FDA in evaluating the drug. Reviews by advisory committees are typical for
new products, such as tetrabenazine, that may treat conditions, which are
uncommon, or for which there are no treatments available.
Prestwick is anxious to make tetrabenazine available to patients with chorea
associated with HD and is working closely with the FDA to supply all of the
information required for the FDA reviews.
Your letters can help!
Thank you.
Deb Lovecky
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