The goal was to combine our collective knowledge and networks to figure out how to treat her rare and aggressive cancer. It was the epitome of #EveryoneIncluded #MedX.
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Leila wanted to live and to improve outcomes for other patients, and she had an army of people, most of whom she’d never met, working to make that happen. She trusted strangers with the most vulnerable information about herself - her health - and none of us took that for granted.
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Within a few weeks,
@Research2People had effectively created an international 60+ person volunteer molecular tumor board w/ experts in oncology, genetics, epigenetics, transcriptomics, immunology, drug development, bioinformatics, clinical trials, community organization, & more.1 reply 1 proslijeđeni tweet 6 korisnika označava da im se sviđaPrikaži ovu nit -
We were running sequencing on samples in
@Snyder_Lab_SU at midnight, samples that her family had to fight so hard to get access to. People broke up into groups to work on different facets of the data we had and the expertise they wanted to bring to bear on her case.pic.twitter.com/dHu17nr5V6
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Some were re-analyzing her sequencing data & looking for cancer sub-clones that could be driving progression, some combing through clinical trials to see what she would qualify for, some hunting for evidence of endogenous retroviruses.
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Others were reaching out to their networks to see if we could get make a personalized cancer vaccine, some coordinating to get new samples for single cell genetic, epigenetic, and transcriptomic sequencing. We were all trying to figure out how to find clinically actionable clues.
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Before the hackathon, Leila’s friends had 5 mouse lines made from her tumor biopsy, and all of us were coming up with ideas of which treatment combinations could be most impactful to test.
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The energy & urgency in the room was palpable, something that we as scientists so rarely get to feel when we’re knee deep in worrying about publications. When science becomes your career & the patient becomes a data point, its easy to forget why we’re doing this in the 1st place.
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While I am deeply saddened by Leila’s death, I’m incredibly grateful to her & her loves ones to have had the privilege of being a part of this group. The work
@Research2People is doing has far-reaching impact, most notably in creating a vision for what community advocacy can be.1 reply 2 proslijeđena tweeta 9 korisnika označava da im se sviđaPrikaži ovu nit -
While the work we did could not help Leila in time, we hope to honor her wish by completing a report on what was done for her case to help future epithelioid sarcoma patients. Navigating healthcare is complex, isolating, & terrifying, but it doesn’t have to be.
1 reply 0 proslijeđenih tweetova 7 korisnika označava da im se sviđaPrikaži ovu nit
We hope sharing the knowledge we built can help others. To quote one of the participants: “At very least every passing can pass on learning, and with initiatives like @Research2People, can create connections of care that stretch beyond any borders.”
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Odgovor korisnicima @draparente @Research2People
What you all did was amazing. Can you estimate the cost ... or how it could be done for another
#sarcoma patient?0 replies 0 proslijeđenih tweetova 0 korisnika označava da im se sviđaHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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