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 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