Running Update:
|
2/20/2023 |
7.6 mi |
1:17:53 |
|
2/24/2023 |
7.6 mi |
1:15:04 |
|
2/26/2023 |
14.1 mi |
2:24:52 |
|
2/27/2023 |
5.0 mi |
50:40 |
|
3/1/2023 |
9.2 mi |
1:32:31 |
Just a little over two weeks to our first race of the year, the NYC Half Marathon! This is the race I had to defer from last year because I had COVID. It will be the seventh time I’m running this event.
NF Update:
Yesterday was Rare Disease Day (www.rarediseaseday.org)! First established in in 2008 by the European Organisation of Rare Diseases, Rare Disease Day is the globally-coordinated movement to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
This year I
was asked to participate in a Rare Disease Day online symposium at the
University of Buffalo School of Medicine!
I was among a dozen or so speakers giving short presentations, each on a
different rare disease. The audience was
mostly medical students, but members of the public were invited to join as
well. The meeting itself wasn't recorded, for privacy reasons,
because some of the presenters interviewed patients in real time; but I was able
to record my talk so that it could be shared.
I hope you enjoy it!
Yesterday was Rare Disease Day (www.rarediseaseday.org)! First established in in 2008 by the European Organisation of Rare Diseases, Rare Disease Day is the globally-coordinated movement to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
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