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I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
diseases as well and thought it would be nice to have a place where
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Sunday, June 11, 2017

FoxFeed Blog: Dr. Rachel Dolhun to TIME: "We Need the Patient Experience to Inform Us"

 Posted by  Kat McCarrick,  June 02, 2017

In 1959, Margaret Bourke-White -- the first female photojournalist accredited to cover World War II combat zones -- courageously detailed her experience being diagnosed and living with Parkinson's disease in LIFE Magazine.
To commemorate the woman who photographed the cover image on the inaugural issue of the magazine, TIME recently featured Bourke-White's story and photographs in an article that not only highlights the journalist's extraordinary accomplishments, but also compares her journey with Parkinson's in 1959 to the treatment options and understanding of the disease nearly 60 years later.
While some aspects of Bourke-White's story will still look recognizable to those living with Parkinson's today, TIME spoke with Rachel Dolhun, MD, vice president of medical communications at The Michael J. Fox Foundation (MJFF) about what has changed since 1959.

https://youtu.be/2aL5SceAt2c

Dr. Dolhun described key advances in symptomatic treatments since Bourke-White's time from the discovery of levodopa, to the evolution of deep brain stimulation. Therapies with potential to slow or stop disease progression are in clinical trials due to key understandings in genetic science in the last 20 years. "The development pipeline is richer than it's ever been," she says.
"Technology is also changing what's possible for researchers and scientists." Dr. Dolhun explains how MJFF's online clinical study Fox Insight, is enabling researchers to partner with patients to better characterize the disease and accelerate treatments:
"Patients can log on and tell researchers about what it's like to live their experience of Parkinson's disease, Dolhun says, and devices like wearables and smartphones are providing new ways to track and communicate about the symptoms...We need the patient experience to inform us so much, and that's why it's so important for patients to be involved directly in research."

To view the full time article: 
http://time.com/4794147/parkinsons-disease-life-magazine/

https://www.michaeljfox.org/foundation/news-detail.php?time-magazine-rachel-dolhun-parkinsons


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