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Amanda Jaksha
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36 followers
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Episode 8 – On location: Global Genes RARE Patient Advocacy Summit
I recorded an episode of Cambridge Biomarketing's Rare in Common podcast at the 7th annual Global Genes RARE Patient Advocacy Summit in Irvine, CA last month. The podcast also features Angie Rowe and rare patient, Christine Von Raesfeld. Listen in to my pat...
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Sign of the Times
Preface: One of my coping mechanisms is to stay busy, leaving no time to dwell on lives could’ve, would’ve, should’ve nuisances. With that said, I recently realized that I had never followed through with a 2017 year-end blog post. I am too busy for regular ...
Sign of the Times
Sign of the Times
tazjaksha.blogspot.com
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A Little Unsteady
Ah, where to start? 2016 has thrown a lot our way, not a lot of good to speak of. I use this space to document Ava's story so I'll stick to her world tonight.  Ava is growing up, change has been brewing in both her health and the level or type of care she r...
A Little Unsteady
A Little Unsteady
tazjaksha.blogspot.com
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Sayonara 2015!
I spent
an afternoon with my yayas mid-week. My hailed soul mothers, my local ladies
that continue to love me (and one another) despite all the years,
tears, and raw emotions that time carries. We came together rather impromptu, with
the heaviest of hearts ...
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A Decade
I’ve
essentially abandoned this blog, it’s rather symbolic of my personal upkeep as
well. I am painfully aware of the fact that I am not a writer, storytelling is
even lower on my totem pole of talent. I can attest that this space has seen me
through some v...
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Who's with me? What will you do to raise expectations in your school district?
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Hmmmm
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Ouch... I struggle often with this topic often
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it's a tiny shock, at least the fact that RC hasn't made the box owner so miserable they had to come forward. unacceptable behavior, period.
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You will see me revving up for Rare Disease Day and GIVE Rare day in the next week. Consider a donation to help rare organizations all over the world, crowd-fund for access to large corporate donors! 
Give RARE for Ava & CDKL5
Give RARE for Ava & CDKL5
giverare.razoo.com
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