NINDS to Fund Collaborative Grant Program With The ALS Association (ALSA) The Huntington's Disease Society of America (HDSA) and The Hereditary Disease Foundation (HDF)

Announcement to Be Made During National ALS Advocacy Day, Thursday, May 17th

Dirksen Senate Office Building Room 562 - Outer Area

May 17, 2001, 01:00 ET from The ALS Association

    CALABASAS, Calif., May 17 /PRNewswire/ --
     Media Announcement and Interview Opportunities
      Location: Dirksen Senate Office Building Room 562 - Outer Area
      11:00am EST (directly following the Senate Special Subcommittee on
      Aging's Hearing on Caregiving)
      Lucie Bruijn, Vice President, Science Director
      The ALS Association (ALSA)
      Jill Heemskerk, Program Director
      National Institutes for Neurological Disorders and Stroke (NINDS)
      General: Barbara T. Boyle, National Executive Director/CEO, HDSA
      800-345-HDSA, ext. 16,
      Science: Christopher A. Ross, M.D., Ph.D., Chairman of HDSA's Medical and
      Scientific Advisory Committee, 410-614-0011,
      Huntington's Disease Society of America
     The press announcement will be made at 11am EST in front of Dirksen Senate
 Office Building Room 562 at the press avail for the U.S. Senate Special
 Committee on Aging, Hearing on Caregiver Support.
     For more information, please call Carol Levey @ 818-692-6549.
     The ALS Association, during its National ALS Advocacy Day, will announce a
 historic collaborative research supplement program with The Huntington's
 Disease Society of America (HDSA) and The Hereditary Disease Foundation (HDF),
 funded by The National Institute of Neurological Disorders and Stroke (NINDS).
 This administrative supplement program is designed to facilitate drug screens
 with neurodegenerative disease models.  This first-of-its-kind collaborative
 research effort is seen as a significant, positive action taken by NIH in
 furthering the search for effective treatments and a cure for these
 neurodegenerative diseases.
     "The aim of this effort is to encourage the testing of an extensive and
 diverse FDA-approved compound collection in models of late onset
 neurodegenerative disorders such as ALS, Huntington's, Parkinson's and
 Alzheimer's disease," stated Lucie Bruijn, Vice President and Scientific
 Director for The ALS Association.  Adds Bruijn, "This is an important and
 exciting collaboration for the ALS community.  ALSA is grateful to the NINDS
 for the commitment of set-aside funds to investigate this drug screen
     The NINDS intends to commit up to $1.0 million in FY 2001 to fund
 approximately 20 administrative supplements in response to this announcement.
 In addition, ALSA, HDSA and the Hereditary Disease Foundation, HDF, will each
 commit up to $100,000 in additional funds, and each will award approximately
 2 supplements based on their own review of relevant applications.
     This administrative supplement program is issued in response to
 recommendations from the NINDS Strategic Plan
 ( and the Parkinson's
 Disease Research Agenda
     This program will compare the effects of approximately 1000 known FDA
 approved drugs in tests for neurodegenerative disorders, including ALS.  A
 drug that works in many different but related disease models will stand out as
 an especially promising candidate for clinical trials.  As many as
 25 investigators will participate in the program, and will submit their
 results to one central database.  After six months, these investigators will
 meet to compare the results and evaluate candidates for clinical trials.
 Because the drugs being studied are already approved for use, they can be
 tested in humans without much of the time consuming animal testing that a new
 drug requires.  "By simultaneously comparing the results of many related
 tests, we hope to quickly find out if an effective treatment exists within
 this set of drugs," says Jill Heemskerk, Director of the ALS program at NINDS.
 "The success of this program depends on joining the efforts of NIH and
 privately funded investigators, and we look forward to working together toward
 our common goal.
     "An important goal of this program is to facilitate the comparison of
 results across multiple assays.  Toward achieving this goal, the NINDS will
 assist investigators in coordinating the results of screens funded under this
 program.  This coordination of data depends on the use of a standard set of
 compounds, which has been designed for this project to include compounds of
 particular interest as treatments for neurodegenerative disease.  This set of
 compounds, identified as the NINDS Custom Collection (NCC), is available from
 MicroSource Discovery Systems, Inc. (860-350-8078).  Investigators will enter
 data into the database supplied by MicroSource Discovery.  To facilitate the
 exchange of information among participating investigators, the NINDS will
 convene a workshop at the end of the supplemental project period (six months
 from the award date of the supplement).  This will allow investigators to
 evaluate and prioritize effective compounds for inclusion in clinical trials.
 In their proposals, investigators should discuss their willingness to screen
 the standard compound set and share their results within this group, as this
 will be an important factor for review," stated Jill Heemskerk, Program
 Director, NINDS.
     Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease
 that occurs when motor nerve cells cease to function and die.  While a
 person's mind remains sharp and alert, muscle control becomes completely lost.
 Every 24 hours, 14 people are given the devastating news they have been
 diagnosed with ALS.
     The ALS Association is the only national not-for-profit voluntary health
 organization dedicated solely to the fight against ALS, through research,
 patient support, information dissemination and public awareness.  For more
 information about ALS and a link to the NINDS RFA, visit
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SOURCE The ALS Association