Off To the Races Tomorrow

November is already shaping up to be busy.  I have several doctor’s appointments, mainly for car accident follow-ups, Social Security Disability verification, but also a few transplant follow-up appointments.  At my next visit with the transplant center mid-month, I’ll actually be given a timeframe of how long they expect my wait will be.  From others I know in my center’s support group, the timing average is usually a month either side of what they say (so if they say 6 months, for example, it could be as little as 5 or as long as 7) but still highly accurate.  For my own sake, I’m hoping that is true in my case & I’m not the oddball…(been there, done that, not always fun.)

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Government Relations Needs In My Own Backyard: Action Alert for PA Friends

I know I have a little work to do very shortly.  It’s been a few years since I’ve been up to making the visits to D.C. to be out in front meeting with Representatives & Senators, showing them how medical research has had an impact on my life.  This was something I enjoyed but was fortunate enough to have good training on in to be an active & effective voice in one’s own government. I was mentored in this realm from the nonprofit I did this work on behalf of.  Yet no training is necessary….it is actually easier than most people realize once you start.

I see another opportunity here, in my own backyard, to do the same even if it’s just an email or perhaps trying to visit or call a few local offices…

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Using Professional Skills To Fight Personal Bureaucratic Headaches

For those who weren’t already aware, I was hit head-on by another vehicle on October 8th & just arrived back home yesterday.  My blog archive details some of the unique challenges presented to my lungs as a result. (Though I know I am lucky to be alive & am; I’m also truly thankful I did not need vast surgeries or invasive treatments or sustain more serious injuries).  I arrived home yesterday finally clear of most pressing & concerning complications.  Getting my life back to normal was welcome, but inevitably it was also tempered with some headaches & hiccups…

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Crowdfunding Research: A New NonProfit Funding Vehicle?

I waited to comment on this campaign until after it was over.  I didn’t want it to color or cloud the novelty & I also wanted an honest evaluation of meeting the outlined expectations & goals.  The TS Alliance works very hard on creating new & innovative ways to fund research. I will always appreciate & champion that.   That said, I do think this is worthy of a larger discussion because certainly other organizations will see this & try & copy or put their own spin on it; which could raise some potential red flags. I’m not “picking on” the organization with these thoughts.  I’m playing devil’s advocate because I know other organizations are certain to see this. They’ll also want to try to replicate it for themselves (like any new idea). They may already be doing that & I’m just not aware of it.

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Back When…

After my red-tape runaround this morning (with trying to be released from the nursing home/rehab center), I did settle down but then couldn’t come up with much to write about. What I saw in my feeds were other bureaucratic & public policy & health nightmares & it pissed me off. I had my fill. I skimmed them, filed them in my head, maybe saved them for another day.  Luckily I was distracted by a call from one of my friends in New York I hadn’t heard from in awhile & that was just the reset & refocus I needed….

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HOT BUTTON: Hero Worship, Inspiration Porn, Pedestal Propping, & Tokenism

I’m not going to dance around this subject any longer.  It’s something I’ve sat with & ruminated on for years. It has caused so much ambivalence & mixed emotion for me at points.  I preface this post with an important distinction from most sources of this “trend” or “problem”  I see circulating in media & cyberspace.  People are being sincere in their views in sharing why they view me as an inspiration. I see this because quite a few of them actually knew me before my illnesses were apparent (or as outwardly so) & also know me after.  (I know they see me, & all of me).   Others have known me since I was very young & grew up with me. Some of these people may have never even known (until my need for transplant) that I was struggling with two rare diseases for most of my life. They admire me for other things than my advocacy & fight.  So when they say I’m inspirational they don’t mean it in a placating or demeaning way. That is why, while I understand the backlash against inspiration porn, I focus on the intent of of the message from the person saying those words to me & our relationship to each other before I even begin to open my mouth…

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Rebuttal: Why We Can Stop Government Funding Of Science: It Doesn’t Create Much Innovation/The Myth of Basic Science

Most of the time I pride myself on not having knee jerk reactions when I see things I don’t agree with. However, yesterday was different.  I couldn’t help but have an initial one to a particular tweet & the articles within it.  Yet, I knew that wasn’t the proper way to get my point across, so….here I am…working on a formal rebuttal just for a weekend kick & change of pace.  Tangible, yet endeavoring to set my own emotion aside until the final strike about what triggered such a reaction.

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