Saturday, October 10, 2015

Cancer Patients Start Protest Group Like ACT UP

Many of you have asked me what I'm doing. I've joined a movement and found like minded women who share several core tenets I value. We met because we share the same disease but more importantly I have been inspired by their brilliant minds, devotion to the women and men who live with or passed from mets and the love they exude. They inspire me to no end and I have re-discovered the activist in me that has been buried for many years. We are the ones the medical community has written off. But now, that machine will hear us, they will be educated and questioned about their actions. It's time to stand up to corporations and non profits who profit from our disease. We are holding die ins and meeting government representatives...I consider myself a documentarian and am honored to capture our efforts with moving images/voices. The video below (uncut raw footage) is a die-in. Instead of a sit in we are calling our events die ins. Much like the aids movement we are watching our friends die all around us. We hope these will bring attention to our cause. This video is of the Seattle die in. It is 5 minutes long. Please watch it so you too can understand how our voices are being heard all over the country. If you want to dig deeper please go to the MET UP.org web site. Next stop a March on the lawn of the White House on October 13. Metastatic awareness day.

http://www.medscape.com/viewarticle/848080

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Beth
https://www.youtube.com/watch?v=oAMmv7na-WA

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Seattle Die-In
https://www.youtube.com/watch?v=M-2yiERavEM


More to come soon....

Fred Hutch is fast tracking research through Iphone apps and crowd sourcing.

Here is the interview with Dr. Love (the woman who wrote Dr. Susan Love's Breast Book- in it's 25th Edition and is now the steward of Share the Journey and the Apple Research kit)

http://www.fredhutch.org/en/news/center-news/2015/10/Susan-Love-fast-tracking-breast-cancer-research.html

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Using iPhone sensors and participant surveys, the Share the Journey: Mind, Body and Wellness after Breast Cancer app tracks five common issues related to breast cancer treatment: fatigue, cognitive difficulties, sleep disturbances, mood changes, and reduction in exercise performance.

http://www.breastcancer.org/about_us/press_room/press_releases/2015/share-the-journey-sage-bionetworks

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Taking research out of the lab and into the real world.

Until now, taking part in a medical study has usually required traveling to a hospital or facility to complete tasks and fill out questionnaires. With ResearchKit, you can use your iPhone to perform activities and generate data wherever you are, providing a source of information that is more objective than ever possible before. This is invaluable to the progress of medical research — and we can all have a hand in it.
What’s more, many of the apps built with ResearchKit will enable you to track your own data and potentially discover correlations between symptoms and daily actions such as diet or exercise.


“We can’t continue to treat people with a one‑size‑fits‑all approach. The kind of data that ResearchKit will provide may be very useful in helping us understand serious diseases and what individuals can do to hasten recovery.”


http://www.apple.com/researchkit/

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