Amanda Haddock 🧬

Advocate. Speaker. Paradigm Shifter. White House Champion of Change for Precision Medicine 🧬, Pres of @BeADragonMaster

[Amanda Haddock 🧬 @AmandaHaddock]

If you aren’t sharing data with a sense of urgency, you are missing the point. Cancer & rare disease patients live in the now. They don’t have time to wait for you to publish a paper. This is not about you. It’s about them. #CuresNotCredit

[Amanda Haddock 🧬 @AmandaHaddock]

@MikeRouah @X @Fx1Jonny I’m sorry you had to deal with that.

[Amanda Haddock 🧬 @AmandaHaddock]

@MacSolutions - I can still hear you 🎵

[Amanda Haddock 🧬 @AmandaHaddock]

Last week I snuck away to work a conference for some folks who are near and dear to me - my Apple Solutions Marketing friends. @PopSockets was there showing off their amazing product. But one person didn’t get the regular giveaway…https://t.co/COOlI3FYEi

[Amanda Haddock 🧬 @AmandaHaddock]

This is an awesome resource, but what if it wasn’t a single patient? @wearecbtn is doing this for children with brain tumors, and I’m curious to know what other projects are out there? @NCICancerCtrl may have a listing?

[Sid Sijbrandij @sytses]

We’ve just made public 125,091 DICOM radiology images from across my cancer journey (link below). The data is both longitudinal and multi-modal, dated and linked to my treatment timeline, so you can compare imaging across initial diagnosis, standard of care, first remission, “founder mode cancer care”, and second remission. It’s viewable in OHIF, the standard open-source viewer used in radiology research.

Given the long history of applying deep learning to radiology, we’re hoping to see a variety of methods and models applied to my data. If you find something interesting, please reach out to [email protected], or if you know a researcher who should see this, tag them below.

Thanks to Terra LaFerriere for organizing these images, and Kamil Slowikowski for building https://t.co/ek0DxOgvEV into the resource it is.

[Amanda Haddock 🧬 @AmandaHaddock]

@sytses @corrie_painter @Ali_Nabavizadeh @FamiliarAriana thought you might want to see this.

[Amanda Haddock 🧬 @AmandaHaddock]

@danamlewis Of course!

[Amanda Haddock 🧬 @AmandaHaddock]

Ooohh! I bet I have followers who would like an app to track their meds! #realworlddata #PatientAdvocacy

[Dana M. Lewis | #OpenAPS 🤖 @danamlewis]

I originally made an app for myself to track a new medication I was trying, added more features, and a friend pointed out that she might use it, too.

This helped me realize I would probably use it a few different ways for occasional med tracking, too.

(1/3)

[Amanda Haddock 🧬 @AmandaHaddock]

Collegiate #esports partnership to help kids with cancer! https://t.co/jXnRE7sxSf

[Amanda Haddock 🧬 @AmandaHaddock]

I haven’t read this yet but the quote below is pure gold.

[Robert West, PhD ✝️ 🟦 🧬⚕️#PM101 @westr]

Is AI Flooding Medical Journals With 'Meaningless' Research? https://t.co/H5yAkAbgLx

"If medical schools and universities don't want the literature to be overwhelmed with garbage," ... "then they should probably stop giving every applicant ... an incentive to publish a lot of crap."

[Al Musella @AlMusella]

The 13th edition of our Brain Tumor Guide for the Newly Diagnosed has just been released!

This free guide helps patients and families understand brain tumors, treatment options, clinical trials, and the questions to ask their medical team.

Read it online or order a free printed copy at:
https://t.co/DQFhpAHHCQ
Please share it with anyone who may benefit.

[Amanda Haddock 🧬 @AmandaHaddock]

I love people who release code for others. Reminds me of all the folks working on @wearecbtn

[Brian M. Schilder @BMSchilder]

I kept hitting this problem across projects: stuck mapping genes before I could do the biology I actually cared about. 🤦💻

I coded my own solutions — then realized everyone else was doing the same. So much wasted time!

So I decided to tidy up my code and release it. 🚀

[Journal of Neuro-Oncology @JNeurooncol]

Photodynamic therapy (PDT) is a promising adjunct treatment for GBM, using light-activated compounds to selectively target tumor cells and promote anti-tumor immune activity. This review highlights current evidence and future clinical applications: https://t.co/FQMIFj638E

[Amanda Haddock 🧬 @AmandaHaddock]

@theNCI Acronym alert

[National Cancer Institute @theNCI]

The 2026 Childhood Cancer Data Initiative Symposium will explore data and AI opportunities to improve outcomes for children, adolescents, and young adults with cancer.
📅 Sept. 18 | In person + virtual
https://t.co/eIB5wduCkO

[Amanda Haddock 🧬 @AmandaHaddock]

@Apple If you know the call is spam, instead of just “accept” or “decline” can we please have a button that won’t let them leave a voicemail? Pretty please.

[Amanda Haddock 🧬 @AmandaHaddock]

I offered help to a friend diagnosed w/ a complicated health issue by having a meal delivered. She referred me to the friend coordinating services. Yay!! I ❤️ that she put someone in charge & felt comfortable just referring me! Something so simple, yet so impactful! #PatientCare

[Amanda Haddock 🧬 @AmandaHaddock]

Doing the work I do puts me in a position to talk to a lot of people who want to help a friend or family member with cancer. I wrote this blog post about some of the things we found handy when taking David in for treatments. https://t.co/UmzrG3AMVd via @AmandaHaddock

[Journal of Neuro-Oncology @JNeurooncol]

Lin et al. characterized the molecular landscape of adult H3 K27-altered diffuse midline glioma following surgical resection. They found significant enrichment of RTK/RAS/PI3K pathway mutations. Read more at: https://t.co/O5l1EPKD2h #MolecularOncology #NeuroOncology

[Amanda Haddock 🧬 @AmandaHaddock]

Leaving #ISPNO2026 and got a lovely amenity bag on the plane. If you have more than you need of items like this, we can repurpose them for @beadragonmaster ! Send me a DM for details💕