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Thread: St. Louis-Based ALS Hope Foundation Pledges $3 Million to Boston-Based ALS Therapy Development Foundation to Fund ALS Hope Drug Discovery Center

  1. #1

    St. Louis-Based ALS Hope Foundation Pledges $3 Million to Boston-Based ALS Therapy Development Foundation to Fund ALS Hope Drug Discovery Center

    St. Louis-Based ALS Hope Foundation Pledges $3 Million to Boston-Based ALS Therapy Development Foundation to Fund ALS Hope Drug Discovery Center

    NEWTON, Mass.--(BW HealthWire)--July 3, 2002--

    World's Largest Drug Screening Effort for ALS

    Related Material:

    Profile of ALS Therapy Development Foundation -

    Profile of ALS Hope -

    The ALS Therapy Development Foundation (ALS-TDF) today announced the creation of the ALS Hope Drug Discovery Center, made possible by a gift from the ALS Hope - the Chris Hobler / James Maritz ALS Foundation.

    The gift is expected to total $3 million over the next 2 years to fund ALS-TDF's full-scale ALS drug screening laboratory located in Cambridge, Mass.

    James A. Heywood, Executive Director of the ALS Therapy Development Foundation, said, "The ALS Hope Drug Discovery Center will allow us to expand one of the most aggressive research initiatives for today's ALS patients. This effort will be the most comprehensive drug screening effort for ALS, and it is our hope that this new process of therapy development will become a model to accelerate the drug discovery process for other orphan diseases. We are deeply grateful to Chris Hobler and the Directors of ALS Hope for their visionary commitment to ALS-TDF and their extraordinary leadership as philanthropists."

    The ALS Hope Drug Discovery Center's mission is to test promising treatment options for ALS patients using the ALS mouse model of the disease. Utilizing advanced technology resources and an interdisciplinary team of researchers from the fields of neurology, immunology, pharmacology, chemistry, and toxicology, ALS-TDF operates and manages the efforts of its unique nonprofit biotechnology laboratory. The ALS-TDF team not only undertakes its own research, but also works with scientists and pharmaceutical companies to rapidly develop new treatments for ALS patients.

    Mr. Hobler, Founder of ALS Hope and an ALS patient, said that he and his family decided to devote a significant portion of their wealth and resources to ALS-TDF because they believe the Boston-based nonprofit biotechnology company is poised to make a real difference in the fight against ALS.

    Before his diagnosis, Mr. Hobler was enjoying a career in an independent rock band, Sonic Joyride. The band was voted one of Boston's top-10 unsigned bands by Boston Magazine's "Best of Boston". Chris' voice was his instrument - since his diagnosis with ALS, however, he is no longer able to sing and has difficulty speaking. He and his wife, Jennifer, reside in St. Louis with their two kids, Aidan, 2, and Ella, 5 months.

    "I wanted the ALS Hope Drug Discovery Center to be my voice, the voice of all ALS patients," said Hobler. "I was devastated when I first heard about my illness, but I knew I had also been afforded an opportunity to make a difference in what was previously labeled a hopeless situation. The ALS Hope Drug Discovery Center offers hope to today's patients and those diagnosed in the future."

    Upon diagnosis, ALS patients are given approximately three to five years to live, and there is currently only one FDA-approved drug for ALS that extends life an average of only three months. Once a promising treatment option arises in the new state-of-the-art ALS Hope Drug Discovery Center, ALS-TDF will work with collaborators at academic institutions to perform rapid clinical trials and disseminate research results in real-time through the Center's unique Bioinformatics program.

    Background on the ALS Therapy Development Foundation

    In December of 1998, Stephen Heywood was diagnosed with Amyotrophic Lateral Sclerosis, often known as ALS or Lou Gehrig's Disease. The prognosis was not favorable: Stephen would experience a rapidly progressive paralysis that doctors could neither explain nor cure, leaving him a prisoner in his own body. Unable to walk, speak, or even breathe independently, Stephen would die of respiratory failure within two to five years. He was 29 years old. Today, Stephen is 33 years old and lives in Newton with his wife and two-year-old son.

    In a race against time to save his brother Stephen's life, James Heywood, left his position as Technology Development Director at Nobel Laureate Gerald Edelman's Neurosciences Institute in 1998 and established the ALS Therapy Development Foundation (ALS-TDF). In the short time since Stephen's diagnosis, ALS-TDF has provided a new level of theoretical understanding on the disease, conducted more transgenic mouse studies than those published in the last seven years of ALS research, engaged a number of pharmaceutical partners in paving a pathway from developing ALS therapies to patient care, and established a new paradigm for creating social value in a market-driven drug development system - all in the name of saving Stephen. One man's personal tragedy now provides hope for 30,000 Americans suffering from ALS and many others diagnosed with related disorders like Alzheimer's, Parkinson's and Huntington's Diseases.

    Interviews are available upon request.

    What is ALS?

    Amyotrophic Lateral Sclerosis (ALS) is a neurological disorder, characterized by the loss of motor neurons. Motor neuron death results in muscle atrophy, paralysis and eventually death due to respiratory failure or choking; 90% of ALS patients die within five years of diagnosis. Roughly 30,000 Americans suffer from ALS, with 8,000 new cases diagnosed each year.


    ALS Therapy Development Foundation

    Rebecca Heidgerd, (617) 796-8826


    ALS Hope

    Mike Schroeder, (314) 725-6888

    SOURCE: ALS Therapy Development Foundation

  2. #2
    Hopefully progress for ALS and all CNS disorders will expand rapidly.

    Would you consider ALS worse than sci?

    Onward and Upward!

  3. #3
    Not sure Chris. Because it's progressive and terminal, I suppose it could be considered worse than SCI but the 3-5 year life span for an ALS sufferer is probably equivalent to the life span of a high, vent dependent quad.

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