Tuesday, December 18, 2018

Return To Functionality Study

I've got a big ask for folks.  As I mentioned before, I'm working with the National Coalition for Cancer Survivorship.  They're a patient centered and patient focused non-profit working to advocate for and empower cancer survivors. They've received a grant to look at measures of return to other words quality of life after treatment ends.  They recognized the need to have someone on their review panel who has a chronic (aka incurable) cancer.  To my surprise and honor, I was asked to be that person.  This is a big deal. We're meeting in DC in February to review work to date.  On the review panel are about 10 other cancer patients.

In the interim, the panelists have been asked if we could try and get fellow patients to answer 4 questions related to quality of life.  I've created a share document, where if you'd like to give your input, you can type right into the share document.  I'll keep everything anonymous.  I've been trying to wrap my head on how best to share and this is what I came up with.  I've also asked a local support group if I can present this in January. It's all new to me, so we'll see how this works.

Many thanks in advance!!  Here is the link to the share document.

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Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.