...together we're better!
Collaborating globally to transform perceptions of Parkinson Disease through creative advocacy.
NOTICE: The Parkinsons Creative Collective, a non profit organization, has ended its operations. Print books are no longer available. The free download of the PDF version will continue to be available on this site and other sites in the future.
About Us - The Story Behind the Book
We had a dream, to make the world of PD better through creative advocacy.
We incorporated PCC as a 501(c)(3) non-profit and created the book. As volunteers, we eliminated the geographic distance from San Diego, California to Birmingham, UK by meeting frequently on Skype. We developed friendships while editing and working. We sought and received grants from family foundations to provide free copies to many PD support group leaders.
We’ve learned much on this journey from dream to book and now we have ‘collective’ PD wisdom. As Paula Wittekind, a founding member said, “Time is not neutral for us.”
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Katherine Huseman Diagnosed in 2001, I'm an impatient e-patient who wants to improve living with PD by maximizing health. I also want to ‘build bridges’ to other chronic disease groups and work together on larger issues.
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Peggy Willocks First noticed PD symptoms at age 39. Participated in clinical trials including one involving experimental Spheramine. Is an active and vocal advocate with PAN, PD Pipeline and PDF.
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Pamela Kell I am a wife of 43 years, a mother of three, grandmother of 5, and a 14 year veteran of PD, working with the PCC toward a new paradigm in how research on treatments and a cure for PD is conducted.
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Linda Herman Co-Author of When Parkinson's Strikes Early. Active advocate with PAN and the Parkinson Pipeline Project
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Perry Cohen Long-term advocate with PAN and the Parkinson Pipeline Project , Perry has studied the placebo effect in PD clinical trials. He joined the board of PCC in 2012. He made significant contributions to the final draft of the book.
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Girija Muralidhar Hi, I am a mother, and a scientist by profession, who is searching and researching for a cure for PD so that future generations will only hear about it.
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Lindy Ashford I am an artist and mum, and would like to see patients, scientists, and doctors come together to transform the lives of people with PD through a broader understanding of how it affects us.
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Laura Brooks On the bus ride of incurable neurodegenerative disease of uncertain origin, I lost several years on the wrong bus. With the help of all the fantastic people on Neurotalk, I am now in the driver's seat.
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May Griebel I avoided acknowledging symptoms for years although I was a practicing physician. My strongest recommendation is to deal with issues as you go along, but commit yourself to living, and to living a full, involved and giving life.
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Nan Little Three years after her diagnosis she climbed to the summit of Mt. Kilimanjaro. She continues her active life by biking, working with Pedaling for PD and joined the PCC board in 2014.
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Robert Cummings Bob was our oldest and authored much of the content on late-onset care, caregivers advice and advanced PD. He really was reporting from the front line, and was an active contributor to the book right to the end. He died early in 2012, and is greatly missed.
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Paula Wittekind Founder member Paula, a long-term advocate for PD through her work with the Parkinson's Pipeline Project, created the first outline of the book. Her perspective and forthright voice can be found throughout the book. Paula lived with PD for more than 20 years. She wrote movingly that her 2012 cancer diagnosis was her 'way out'. She died in the fall of 2012; we miss her wisdom, humor and presence.
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Long term NeuroTalk members Jaye Wheeler and John Citron were involved in the early days, helping with technical aspects, and contributing to book content, respectively. Both had commitments that made it impossible to continue as active participants. We thank them for their contributions.