IndyFix

Husband x 1 | Father × 3 | Ironman x 3
Pro-Snacker | CEO Rain or Shine Ventures I 2015 Gold Gussie 🥇

[Lori Mills @LoriMills4CA42]

Yet the FDA requires cancer patients to fail standard care before they can be accepted into a trial.
My husband has GBM and we were fortunate to gain access to ANKTIVA and NK cell therapy.
We are beating Terminal GBM, yet most patients cannot gain access.
We need these therapies available Nationwide for all cancer patients.

[IndyFix @llevar_el_uno]

@NFL

Incredibly dissapointing. Redzone continues to jog, lag, drag - one hour in.

This is such an incredibly poor experience.

[IndyFix @llevar_el_uno]

@NFL

This is the worst redzone experience in 18+ years via your NFL app.

Last week - first hour or more, just broke.

This week - stops, starts, lags, misses plays.

[Mark Jeffrey @markjeffrey]

This is unbelievable.

We have NEVER seen anything remotely like this from competitive humanoid companies.

The AI brain is *everything*.

Well-done @Figure_robot!

[Amanda Hollensbe (Braelyn’s Mom) @HollensbeAmanda]

Brad Silver received DCVax-L in one of the earliest trials after being diagnosed with GBM in his early 30s. He’s now a 23-year survivor.

Jamil Newirth was diagnosed at 32 and given approximately 17 months to live. He received UCLA’s personalized dendritic-cell vaccine and was profiled by UCLA more than a decade later, alive and thriving.

Sarah Rigby was diagnosed with GBM in 2011 and has been documented more than 12 years later as a long-term DCVax patient.

Nigel French was diagnosed with GBM in 2015, entered the DCVax-L trial at King’s College Hospital and was subsequently documented in long-term remission.

Kat Charles was diagnosed with grade 4 GBM in 2013 and at one point was told she had only three months to live. She later obtained a personalized dendritic-cell vaccine and continued receiving maintenance booster injections. More than a decade later, hers remains an extraordinary long-term-survivor story.

And I found other early UCLA dendritic-cell-vaccine survivors, including Jennifer Sugioka, Elijah Luyten and Gallia Kistler.

[Amanda Hollensbe (Braelyn’s Mom) @HollensbeAmanda]

THIS. ❤️

I’m incredibly grateful that Braelyn’s story is reaching so many people — but the clean scan does not mean treatment is over.

She still has years of planned DCVax treatments ahead, with repeated trips to London costing about $36,000 each.

So every share matters. Every donation matters. And sharing the GoFundMe matters too.

Thank you, Voloda for caring about Braelyn beyond the headline. ❤️
We are so grateful for everyone who has donated to help with her treatment costs. Please continue to share our story.

https://t.co/uMICOowgL2

[Jude Gomila @judegomila]

I've attempted to map everything in oncology in a public website and open source repo for all.

The site is trying to get all cancers, products, technologies, bottlenecks, people, startup opportunities with 1000+ ideas for upgrading the field.

If you have a loved one with cancer and you are technical or can engineer, go take a look, file improvement requests or bugs or help with the open repo and make this the best open and free info resource for individuals, researchers and educational use.

This should save people time, aid AI oncology projects and generate positive action. If you are not technical just complain in this thread about broken or annoying or things you want and I'll fix them live.

Some of the interesting pages:

Treatments: https://t.co/EJEOhMppoB

A gallery of the molecules being used https://t.co/EV6ZitrVqm

And targets: https://t.co/CgkjuF8nR2

The technologies in oncology: https://t.co/lNaieWYRKH

1100 ideas for helping oncology: https://t.co/iQA6Z5SvRA

Bottlenecks on oncology: https://t.co/WND44055WD

Open questions (LETS GO RESEARCH PEOPLE) https://t.co/wSbphQ0IBg

Startup requests (LETS GO STARTUP PEOPLE) https://t.co/PphztuLihP

Mechanics of cancer: https://t.co/cMUyVObzZi

Battlefronts: https://t.co/PlSZitVd50

Isotope supply: https://t.co/2Pcl4tTuPv

Key papers: https://t.co/YK0dW1XJj0

Pipeline funnels: https://t.co/xYcbSCSyBg

Cancer by type: https://t.co/d9k8Yyzdk7

Institutional rankings: https://t.co/VepXcKHhaa

The startups: https://t.co/whXKg5dPzb

Heros and heroines : https://t.co/uLDmhRjE36

Key medical people: https://t.co/JWhDZ0rC73

Here is the project roadmap: https://t.co/UtbbuOsdA5

Models and data sets: https://t.co/bim0tjiWOj

There are other views as well, take a browse.

Try making a PR if you have an upgrade to this on the repo here: https://t.co/2Dw0ufEJ3z

If you are biologically/medically minded and something is wrong, file a bug as well or say on the thread and we will get it fixed live.

If this is a useful project star the repo and help get it calibrated.

I've tried to add some other languages but I cannot speak them so tell me if that doesnt work well.

I believe we will crack oncology and having total information dominance is key to the problem.

Let the feedback flow!

[Lori Mills @LoriMills4CA42]

Terminal patients fighting for therapy that should be available nationwide are succeeding!
The FDA needs to expand access to #ANKTIVA, PD-L1 therapy, and DC Vax!
Right to Try should not have obstacles!
So happy for Amanda and Braelyn. DC Vax is working! Six months ago I sat on the phone with a mom crying and praying for hope. Today, we celebrate!

[Amanda Hollensbe (Braelyn’s Mom) @HollensbeAmanda]

I have been waiting almost 3 years to write these words:

NO EVIDENCE OF DISEASE. 🙏❤️

Today we met with Braelyn’s neurosurgeon, Dr. Linda Liau at UCLA (telehealth).

When our local radiologist read Braelyn’s August 28 MRI as “no evidence of disease recurrence,” we were thrilled—but I was afraid to fully exhale.

I knew Dr. Liau and the UCLA tumor board would scrutinize every millimeter of those images.

What if they saw something the local radiologist missed?

Today, Dr. Liau told us that she and the tumor board had thoroughly reviewed Braelyn’s MRI.

They were amazed.

There is NO VISIBLE TUMOR.

Even the ~10% Dr. Liau had to leave behind during surgery because of its intimate involvement with critical structures is no longer visible.

She emphasized how amazed and pleased the entire tumor board was by such a complete response at this point.

Her assessment: the prior radiation and the ongoing DCVax appear to be working very well.

Their recommendation after also reviewing the Keytruda regimen Braelyn recently started?

KEEP DOING WHAT SHE’S DOING.

😭🙏

First and foremost, we give ALL thanks and glory to God.

People all over the world have prayed for this girl. I cannot begin to express how humbled and grateful we are.

But tonight I also cannot stop thinking about how close Braelyn came to never having this opportunity.

Earlier this year, her tumor was enormous and growing rapidly.

We sought help from multiple surgeons—including at prestigious institutions.

We were told further surgery was too risky.

We were offered the same old options: chemotherapy and photon radiation that would affect most of her brain, given the size of her tumor.

Her tumor is MGMT-unmethylated, so for Braelyn, chemo was all risk with little to no benefit.

And then a stranger I met here on X changed everything. @ThomasOwenMcCa1 connected us with Dr. Liau.

After reviewing Braelyn’s case, one of the first things she said was:

“This girl needs surgery right away.”

I told her we knew that. We just couldn’t find anyone willing to do it.

I asked if SHE would.

“If you can get her to me, I will do her surgery.”

We got Braelyn to UCLA.

Within two weeks, Dr. Liau operated and removed ~90% of a massive tumor spanning three lobes, stopping where continuing would risk critical structures.

And this time, her tumor tissue was PROPERLY PRESERVED.

That tissue was ultimately sent to England and used to manufacture Braelyn’s personalized DCVax vaccine.

She has now received 3 induction doses + her first booster.

And today?

The tumor that Dr. Liau had to leave behind is no longer visible on MRI.

Think about that.

And then think about what could have happened if we had simply accepted “there’s nothing else we can do.”

THIS is why I will not stop advocating for reform.

Patients should not have to find potentially life-saving treatment options accidentally through strangers on social media.

Patients should be told about legitimate investigational options when standard treatment offers little hope.

Patients undergoing tumor surgery should be informed BEFORE surgery about preservation of tissue that could potentially be used for personalized treatments.

And patients should have the right to make informed decisions about which risks they are willing to take.

Promising science means very little if the patients who need it cannot access it.

Braelyn is living proof of why access matters.

Tonight, though, advocacy can wait for just a moment.

Tonight I’m her mom.

And I finally get to say the words I have begged God to someday let me say:

NO EVIDENCE OF DISEASE.

Thank You, God.

Thank you, Dr. Liau.

Thank you to everyone who opened a door, donated, shared her story, fought for her and prayed for our girl.

There is always light, even in the darkest places.

Tonight that light is shining incredibly bright. ❤️🙏

#DCVaxForBraelyn #CureNotCovered
@greta
@kshaughnessy2
@andrewcaravello

[IndyFix @llevar_el_uno]

@MichaelRippe Clean? My friend - you are not in Chicago.

[IndyFix @llevar_el_uno]

@dougboneparth that thing was pick us up from school dad

[Sam Altman @sama]

big 🚢 this week

and then for devday

🚢🚢🚢🚢🚢🚢

[Dr. Alex Wissner-Gross @alexwg]

https://t.co/S1J431Gwzf

[Cody Joyce @CJoyce42]

Death, Taxes, and the NFL app not working on Week 1

[One Sec Benny @onesecbenny]

@NFLPlus And can’t stream red zone right now. First quarter of the first Sunday slate. Embarrassing.

[IndyFix @llevar_el_uno]

@NFLPlus This is super tough. Work long weeks - favorite way to watch football. This is incredibly hard to make peace with.

[Loveless @LovelessEnt]

The NFL app is down. I can’t access RedZone. 30 minutes into kickoff Sunday is ruined.

[Rabkovský @rabkovsky69]

Hey @NFL @NFLPlus It is GENUINELY criminal what you just did. We waited 7 months for kickoff on @NFLRedZone247 and your app (ONCE AGAIN) craps out?! COME ON, GUYS. How can your TV App be THIS glitchy? You're a bazillion dollar corporation! You can't figure this out?!

[Mike Mulraney @mullrainee]

How is RedZone down on the app. Did you not know it was opening day? What do I pay you for @NFL

[Supeski @SUPESKI_YT]

Is anyone else having issue getting the redzone channel through the NFL App ??