PatientsLikeMe ™

Parkinson’s disease community:

• October 2008, started the Living Well with Parkinson’s support group in Gettysburg, PA, co-lead by a Lee Silverman Voice Therapy (LSVT) clinician. 
• Member of the committee that wrote the Declaration of Clinical Research Rights and Responsibilities for People with Parkinson’s, sponsored by and promoted by Parkinson's Disease Foundation (PDF). (This document took approximately two years to write.)
• Member of the committee that wrote Participating in Parkinson’s Clinical Research: Questions to Ask, a partner document for the Declaration.  A checklist that patients can use when considering a clinical trial, sponsored and promoted by Parkinson's Disease Foundation (PDF).  (This document took approximately two years to write.)
• Planning Committee Member for the Parkinson’s Disease Foundation (PDF) 2008 Clinical Research Learning Institute
• Co-author the Poster: Parkinson's Disease Clinical Trials: Square Pegs in Round Holes? – Presented by the Parkinson Pipeline Project at the 2009 American Society for Experimental Neurotherapeutics (ASENT) Conference.
• Parkinson's Action Network (PAN) - PAN Pennsylvania Congressional Coordinator.  I speak to support groups in the region around my home.
• A member on the PAN Outreach Committee.
• Core Member of the Parkinson Pipeline Project (approx 10/11 years.)
• Web administrator for the Parkinson Pipeline Project.
• In 2007, with a Parkinson’s Disease Foundation (PDF) staffer, presented about clinical trials to a Nebraska APDA group leader meeting and the next day a state-wide APDA symposium in Omaha, Nebraska. 
• In 2008, participant on a patient-panel in Philadelphia for the Center for Information & Study on Clinical Research Participation (CISCRP) Aware For All - Clinical Research Day.
• In 2008, with two other PWPs, along with our Parkinson's Disease Foundation (PDF) sponsor, presented "Clinical Trial Participation: Up Close and Personal" at the annual Young Onset Parkinson’s Network annual conference in Atlanta.
• In 2009, an invited panelist at a Contract Research Organization (CRO) conference in Philadelphia.
• In May of 2010, an invited panelist at the National Institutes of Health (NIH) providing the patients perspective on clinical trials.

Awards:

2009 Murray Charters Award For Outstanding Service to the Parkinson’s Community, a PAN service award recognizing a member of the Parkinson’s community who has selflessly committed time or resources for the betterment of the community as a whole."