Parkinson Disease Advocacy

1
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
2
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

3
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

4
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

5
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

6
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

7
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

8
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

9
Parkinson Disease Advocacy

• Advocacy does not equal a cure for Parkinsons
  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
10
Parkinson Disease Advocacy
Draft Public Service Announcement (PSA)
11

• Q A