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Where Are They Now? Profiles of 2008 Learning Institute Graduates
The strength of the Parkinson’s disease (PD) movement, like many other causes, rests primarily in the advocacy efforts of the people who live with or are affected by the disease. And one important use of advocacy is to spread awareness of the importance of participating in clinical studies. These were the ideas behind PDF’s first Clinical Research Learning Institute, held last July on Long Island, New York.
In the past year, Learning Institute graduates have been actively working to increase knowledge of clinical studies throughout the PD community and to advocate for a “patient perspective” in the clinical research process.
Here are some highlights from four of last year’s 25 participants. If you are inspired by their stories, consider applying to PDF's 2009 Learning Institute, which is accepting applications until July 17.
Sister Mary C. Daniel, O.P., M.Ed., M.Th.
Sr. Mary brought to the Learning Institute her experiences as a leader of a local PD support group and as a teacher, administrator and regional superintendent of schools for the Archdiocese of New Orleans, LA.
Already an active Parkinson’s educator previous to the Learning Institute, Sr. Mary has continued her PD community outreach, but now emphasizes to others how important it is to be willing to participate in clinical studies. Her message seems to have had an impact: at least 15 people with Parkinson’s who have heard it have gone on to sign up for a trial for the first time.
In May, Sr. Mary was one of the first individuals to represent people with Parkinson’s at the annual meeting of the Parkinson Study Group (PSG), a nonprofit, cooperative group of 400 investigators, coordinators and scientists who conduct clinical trials at 126 sites throughout the US and Canada.
Susan J. Foster, R.N., B.S.N., M.A.
Ms. Foster has more than 25 years of experience in clinical research, sales training and product marketing in the pharmaceutical industry.
Ms. Foster is now a patient advocate for a Stanford University affiliated Stem Cell Research Oversight committee. In this position, she will review stem cell research projects for nonprofit groups that may not have the resources to do so themselves, providing the studies with the vital patient perspective. Ms. Foster also provided this patient perspective in May, when she joined Sr. Mary as one of the first people with PD to attend the annual PSG meeting.
Mr. Robledo an elementary school reading specialist in Midland, TX, previously worked for the Texas Department of Human Services.
In his new role, Mr. Robledo has given presentations about clinical study involvement to local support groups, community groups and health fairs. He will soon be featured in a two-part special on Parkinson’s produced by a CBS affiliate television station. Mr. Robledo has a special interest in raising awareness about clinical research within minority communities and has spoken to the Black Ministers Alliance about this issue.
Stanley Wertheimer, B.Ch.E., M.S., Ph.D.
Mr. Wertheimer is Professor Emeritus of Mathematics at Connecticut College and both co-facilitator and co-founder of the Connecticut Parkinson’s Working Group (CPWG) in New Haven, CT.
Since the Learning Institute, he has used CPWG’s print newsletter and website to educate his community about clinical research and has also led information sessions at the Institute for Neurodegenerative Disorders. In collaboration with local research groups, he is planning an annual CPWG meeting that will be devoted solely to clinical research. The CPWG also recently became a partner of PDtrials, a collaborative initiative led by PDF and supported by many other PD organizations that is dedicated to increasing awareness about clinical studies.
The Next Class
After just one year, these four graduates and their 21 colleagues have done much to spread the word about Parkinson’s clinical studies. To build upon the foundation laid by this group, PDF is in the process of organizing the Second Clinical Research Learning Institute, to be held in October 2009. Are you interested in learning more about the 2009 Learning Institute or applying to attend?