I would appreciate any comment on the following, just released today, 1/19/05. The doctor listed for Dallas is my doctor. I meet the listed requirements:
>> This is for your information. Get the word out to your family members
with facioscapulohumeral muscular dystrophy (FSHD) and those you know
who live close to the clinical trial test sites. Contact the doctors
below if you are interested in participating in the trials.
Wyeth-Ayerst sites for myostatin inhibitor MYO-029 clinical trial are
listed below.
Myostatin inhibitors have never been tried in human trials. This is
the first drug and first trial. FSHD is the lead candidate and
prospect thanks to the work of the FSH Society, Inc.
Each site will enroll 12 patients. 4 FSHD, 4 LGMD, 4 Becker MD.
Initial toxicity studies are done. There some side effects that are
consistent with monoclonal antibody therapy.
This next stage of the trial is to determine dosing at three different
levels and clinical efficacy.
Patients must be genetically confirmed.
The MSTN-inhibitor drug is administered via intravenous infusion.
Initial patient visit/transfusion may or may nor require an overnight
stay. New infusion every other week for six months and three more
months follow-up. Two muscle biopsies are optional.
Patients should have average muscle strength grade of 3. As general
rule patient should be able to walk 30 feet unaided except for use of
orthotic braces e.g. AFOs.
9 sites U.S.. 2 or 3 sites U.K. are currently enrolling four FSHD
patients and you may wish to contact the following. Most will request
that you be within one hour of the hospital given the number of
visits.
Wyeth-Ayerst sites for myostatin inhibitor MYO-029 clinical trial:
List based on my best information to date.
Brigham and Women's Hospital, Boston (Anthony Amato)
University of Rochester, Rochester, New York (Rabi Tawil)
Washington University, St. Louis, Missouri (Alan Pestronk)
Johns Hopkin's Medical, Baltimore, Maryland (Kathryn Wagner)
Kansas University Medical Center, Kansas City, Kansas (David
Saperstein)
University of Utah, Salt Lake City, Utah (Kevin Flanigan)
Children's Hospital DC, Washington DC (Diana Escolar)
Ohio State University, Columbus, Ohio (Jerry Mendell)
University of Texas Southwestern, Dallas, Texas (Sharon Nations)
University of Newcastle upon Tyne, Newcastle upon Tyne, United Kingdom
(Kate Bushby)
King's College Hospital, London, England (Michael Rose, Caroline
Murphy)
I am uncertain about Oxford.
Oxford University, Oxford, United Kingdom (David Hilton-Jones)
My best,
Daniel Paul Perez
President & CEO
FSH Society, Inc.<<