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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

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 advocacy2
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

Draft Public Service Announcement (PSA):