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Parkinson Disease Advocacy. Fighting for a Cure. Steve Hochberger President, Southeast Parkinson Disease Association Co-Director, Floridians for the Advancement of Medical Research Personnel Coordinator, Parkinson Pipeline Project. Parkinson Disease Advocacy. What is advocacy?

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Parkinson Disease Advocacy

Fighting for a Cure

Steve Hochberger

President, Southeast Parkinson Disease Association

Co-Director, Floridians for the Advancement of Medical Research

Personnel Coordinator, Parkinson Pipeline Project

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Parkinson Disease Advocacy

  • What is advocacy?

    • Actively supporting an idea or cause that you are passionate about

    • Speaking out about what it means to have Parkinson Disease

    • Fundraising for research, education and patient services

    • Getting involved with public policy, increasing the attention government gives to support / fund research

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Parkinson Disease Advocacy

  • Issues for advocacy in Parkinson Disease:

    • Stem Cell Research

      • Petition signing

      • Sending email / letters to legislators

      • Sending email / letters to media

    • GDNF clinical trial

      • Patient lawsuits

      • Media campaigns – CBS 60 minutes

      • Sending email / letters to Amgen CEO

    • Research Participant Bill-of-Rights

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Parkinson Disease Advocacy

  • Stem Cell Research

    • House of Representatives passed HR-810, Stem Cell Research Enhancement Act of 2005, on May 28th 2005: 238-194

      • Defines ethical requirements for human embryonic stem cell research

      • Using only embryos from in vitro fertilization clinics:

        • in excess of clinical needs

        • that would never be implanted, or will be discarded

        • from donors who made written informed consent without financial remuneration

    • S.471, the Senate version of HR-810, was to be voted on in September 2005, but has now been postponed until early 2006 – currently 41 co-sponsors

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Parkinson Disease Advocacy

  • GDNF Clinical Trials

    • Glial cell line derived neurotrophic factor-

      • a naturally occurring protein in the brain that nourishes and promotes the growth, regeneration and protection of dopamine producing neurons

    • Successful Phase I clinical trial in the UK showed significant improvement in symptoms with no adverse affects

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Parkinson Disease Advocacy

  • GDNF Clinical Trials

    • GDNF is delivered to the target area in the brain using a pump system and catheter

    • Phase II Clinical Trials were halted by AMGEN, and GDNF was withheld from trial participants

    • Patients’ sued for ‘compassionate use’

    • Patient advocates mounted media and scientific campaign to ‘convince’ AMGEN to:

      • reinstate human trials

      • continue use of GDNF for original participants

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Parkinson Disease Advocacy

  • Research Participant Bill of Rights

    • Tool being developed by Parkinson Pipeline Project

    • Maximize clinical trial recruitment thru an atmosphere of mutual trust

    • Participants will be:

      • better informed and protected

      • working with drug companies as a team

        • Full disclosure of potential risks

        • Participate in decision-making

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Parkinson Disease Advocacy

  • What can you do to become an advocate?

    • Raise public awareness of Parkinson Disease

    • Share your unique insight as a patient

    • Join or start a support group

    • Organize or participate in a fundraiser

    • Participate in clinical trials

    • Contact your legislators at state and federal levels regarding funding for research

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Parkinson Disease Advocacy

  • Advocacy does not equal a cure for Parkinson’s disease, but is a means towards that end

  • Engage the people you elect to lead us, engage your community and be the unified voice for this most important cause

The missing ingredient in development of new therapies and

a cure is the voice of the patient…

Dr. Perry Cohen, PhD

Parkinson Pipeline Project

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Parkinson Disease Advocacy

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