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? 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

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

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

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

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

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

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

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

Parkinson Disease Advocacy Draft Public Service Announcement (PSA):

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