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 / letters to legislators
Sending / letters to media
GDNF clinical trial
Patient lawsuits
Media campaigns – CBS 60 minutes
Sending / 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:
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 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

10. Parkinson Disease Advocacy
Draft Public Service Announcement (PSA):

11. Q & A