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Showing posts from January, 2013

ScienceOnline 2013

This week I'm heading down to the Research Triangle—aka where I was born and where I returned to go to college—for ScienceOnline 2013. In short, it is a gathering of 450 people who love science and particularly love writing about science. It may well be the nerdiest (said inclusively and with endearment), smartest, and most nitpicky collection of conference goers of which I've ever been a part. I'm thrilled.

I'm fortunate to be one of only 28 to make it on the list for the Duke Lemur Center tour on Wednesday afternoon. The Duke Lemur Center, established in 1966, is the world’s largest sanctuary for rare and endangered prosimian primates. There are about 250 animals, including 233 lemurs encompassing 15 species, along with lorises from India and Southeast Asia and bushbabies from Africa. Speaking of babies, there's a new one. And we get to meet her.

As the tweets (#scio13) have increased in number as the conference approaches, there have been mentions of candy poker…

Learning How To Take No For An Answer

Being an advocate is hard. 
In public, we celebrate the victories. We laud partnerships, and announce accomplishments. We mark honors, and unveil new opportunities. What we don't do is draw attention to our failures. 
For every email sent, there are five more unanswered. For every sponsor whose logo bedecks the ballroom banner, there are ten more who said no. For every grant awarded, there are twenty more for which one was unqualified to apply or deemed unworthy. For every yes, there are a hundred replies no.
To fight for a cause is to be beleaguered by it, for even successes beget problems. To fight for a cause is to work one's self out of a job, for true success means that one no longer is needed. 
Confession: sometimes I wonder what it would be like if I just stopped. What if I went off the radar, stopped pushing, got quiet, took up sewing instead? I could cancel all my doctor's appointments, quit taking my medications, move out even further into the country, write with…

Medical Research and the Gaps Between Cause, Treatment, and Cure

I am sick, and I am tired.
I am sick of being an anomaly.
I am tired of fighting against my body.
I am sick of reading headlines about unnecessary, yet well-funded, research.
I am tired of not being considered a sound research investment.
I am sick of competing for attention.
I am tired of being sent home without an answer.
I am sick of doctors who think they know more about a disease than the patients who live with it.
I am tired of doctors who know nothing about my disease at all.
I am sick of money being wasted collecting data that is too vague to provide answers.
I am tired of feeling as though any true breakthroughs will have to come from the patient community.

Every day fibromuscular dysplasia patients connect with one another in a Facebook group facilitated by the international, nonprofit organization FMD Chat, of which I am founder. Every day this group of patients checks in on one another. Every day group members discuss how they're feeling—physically and emotionally. Eve…