My teen students want to be the #JulesVerne of genomics 🚀 writing our own #ScienceFiction MITxBio 7.00x, 7.28.1x-2x, 7.QBWx certified, former ballerina 🩰🧬💫
Aix-en-Provence, France
Joined March 2010
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SpaceAix and former Elon Musk school have been teaching creative writing for over a decade, asking students to write their own science-fiction 🚀💫
Now moving to Chinese-speaking fictional and non-fictional world 🇨🇳
To become a multi-planetary species 🚀 humanity will need to become a multi-omics 🩺🧬species first
medium.com/biomedical-chroni…
Abattoir Cooperl : la détresse des cochons gazés à la chaîne youtu.be/oZpJafFuXGA?si=PhXY… #Carrefour
SpaceAix retweeted
❤️ THIS is why we keep fighting!
Andrew, I cannot thank you enough for the extraordinary time, research, and dedication you’ve poured into this proposal.
You understand something that families like ours know all too well: Accessing a promising treatment is only half the battle. Being able to CONTINUE that treatment is just as important.
Braelyn is 19, attending college, and her latest MRI shows NO EVIDENCE OF DISEASE. Yet we must continue traveling across the Atlantic and raising tens of thousands of dollars for each DCVax treatment.
No family fighting for their child’s life should have to face these barriers.
To see Braelyn’s story helping inspire meaningful proposals to the FDA—and being shared in the British Parliament in the SAME WEEK—is almost surreal!
My deepest hope is that the doors we’re fighting to open for Braelyn will remain open for every patient who comes after her.
Thank you, Andrew, for standing with us and turning compassion into action. ❤️🙏🇺🇸🇬🇧
Please read Andrew’s proposal and add your voice to the FDA’s public comment process!
$NWBO #DCVax #DCVaxForBraelyn #RareCancer #RareDisease #Immunotherapy #PatientAdvocacy #GBM
🧬 𝗧𝗵𝗲 𝗗𝗖𝗩𝗮𝘅 𝗽𝗿𝗼𝗽𝗼𝘀𝗮𝗹 𝗶𝘀 𝗻𝗼𝘄 𝗼𝗻 𝘁𝗵𝗲 𝗙𝗗𝗔 𝗿𝗲𝗰𝗼𝗿𝗱.
A 19-year-old was in college when she began DCVax-L in London. Treatment had started. Her family was still raising money for the next dose.
Her mother's account stayed with me. Underneath it is one question:
𝗛𝗼𝘄 𝗱𝗼𝗲𝘀 𝗮 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝘀𝘁𝗮𝗿𝘁 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁 𝗮𝗻𝗱 𝗸𝗲𝗲𝗽 𝗴𝗲𝘁𝘁𝗶𝗻𝗴 𝗶𝘁?
On November 6, my 21-page proposal became part of the public record for the FDA's Rare Disease Framework Initiative. I filed it as a physician and patient advocate, independent of Northwest Biotherapeutics.
Both treatments start with the patient's own dendritic cells, the cells that teach T cells what to recognize. DCVax-L introduces them to material from the patient's tumor in the lab. DCVax-Direct is injected into a lesion so they meet the tumor there. Same cells, two ways to show them the target.
Rare cancers come with no playbook for getting a treatment like this and keeping it. The proposal asks FDA to write one, using 𝗗𝗖𝗩𝗮𝘅-𝗟 𝗮𝗻𝗱 𝗗𝗖𝗩𝗮𝘅-𝗗𝗶𝗿𝗲𝗰𝘁 as the working example.
𝗧𝗵𝗲 𝗽𝗿𝗼𝗽𝗼𝘀𝗮𝗹 𝗮𝘀𝗸𝘀 𝗙𝗗𝗔 𝗳𝗼𝗿 𝘁𝗵𝗿𝗲𝗲 𝘁𝗵𝗶𝗻𝗴𝘀, 𝗶𝗻 𝘄𝗿𝗶𝘁𝗶𝗻𝗴:
1. What the evidence supports for each treatment.
2. Who must arrange to preserve tumor tissue before surgery.
3. Who is responsible for supply and follow-up, so a family knows whom to call when the next dose is due.
Plain answers, on paper, so the next family is not guessing.
📄 𝗥𝗲𝗮𝗱 𝘁𝗵𝗲 𝗽𝘂𝗯𝗹𝗶𝗰 𝗳𝗶𝗹𝗶𝗻𝗴
regulations.gov/comment/FDA-…
📖 𝗢𝗽𝗲𝗻 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹 𝗽𝗿𝗼𝗽𝗼𝘀𝗮𝗹 · 𝟮𝟭 𝗽𝗮𝗴𝗲𝘀 · 𝟱𝟮 𝘀𝗼𝘂𝗿𝗰𝗲𝘀
mirrulations.s3.amazonaws.co…
𝗪𝗵𝗮𝘁 𝗱𝗼 𝘆𝗼𝘂 𝘄𝗶𝘀𝗵 𝘀𝗼𝗺𝗲𝗼𝗻𝗲 𝗵𝗮𝗱 𝘁𝗼𝗹𝗱 𝘆𝗼𝘂𝗿 𝗳𝗮𝗺𝗶𝗹𝘆 𝘀𝗼𝗼𝗻𝗲𝗿?
FDA is taking public comments through 𝗗𝗲𝗰𝗲𝗺𝗯𝗲𝗿 𝟭𝟭, 𝟮𝟬𝟮𝟲. You do not need to be a doctor or a lawyer. A few sentences in your own words count: the barrier your family hit, what it cost the person you love, and the one thing you want FDA to change. To stand behind this proposal, cite 𝗙𝗗𝗔-𝟮𝟬𝟮𝟲-𝗡-𝟭𝟮𝟮𝟭𝟰-𝟬𝟬𝟯𝟵.
No family should be raising money for the next dose while their child is mid-treatment. 𝗧𝗲𝗹𝗹 𝗙𝗗𝗔.
✍️ 𝗔𝗱𝗱 𝘆𝗼𝘂𝗿 𝘃𝗼𝗶𝗰𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗙𝗗𝗔 𝗱𝗼𝗰𝗸𝗲𝘁
regulations.gov/commenton/FD…
🎥 𝗧𝗵𝗮𝘁 𝟭𝟵-𝘆𝗲𝗮𝗿-𝗼𝗹𝗱 𝗵𝗮𝘀 𝗮 𝗻𝗮𝗺𝗲. On Wednesday, Braelyn Hollensbe sat in the gallery of the House of Commons while an MP asked the Government to help get this treatment into widespread use, and the First Secretary of State replied that the Prime Minister has taken a personal interest. One Parliament has asked the question out loud. The FDA docket is where the rest of us ask it.
@FDA @ReaganUdall @RareDiseases @NBTStweets @HollensbeAmanda @mfhugo1 @ThomasOwenMcCa1 @peter_brit @greta @DrOzCMS @DrOz @MelDMann @AlMusella @MHRAgovuk
SpaceAix retweeted
Yesterday I posted about working with an AI scientist to find new ways to fight my cancer.
A chemistry professor at the University of Michigan saw it and emailed me. Matt Soellner @mbsoellner works on the exact kind of lung cancer I have. He offered to synthesize compounds and test them in cells and animals.
A lightbulb 💡 goes off above my head. Obviously...I MUST introduce Matt to Jan.
Andddd by this morning, they're talking about how to take an AI-designed molecule off a computer screen, make it in a lab, and find out whether it can fight my cancer.
EXCUSE ME!? Less than 24 hours after my post.
We haven't made a drug. We don't know whether any of this will work. Making and testing compounds will take months.
But Matt saw a patient trying to find a way forward and chose to help. He brought the ability to make and test things that might otherwise never leave a computer screen.
I'm sharing this as it happens because this is what gets me excited about AI. I can put my story out there, connect people with different skills, and help move an idea toward an actual experiment against cancer.
I deal with the every day bullshit from cancer as a patient but have realized there's an army of incredible people out there working hard behind the scenes on treatments and cures for people like me and millions of others.
It's an honor and a privilege to bring their efforts out for the world to see. AI is accelerating what these scientists can do. I'm just the human meat proxy making introductions and sharing the story.
But if that helps get a promising idea off a screen and into a lab faster, I'll take it! 🥩
So get this...a stranger DM'd me on X and offered to help design my backup cancer drug. For free!
His name is Jan Domanski @jandom_random. He runs science at @open_fold, an open-source AI model that predicts how proteins and drugs physically fit together.
My cancer is driven by one broken protein called ALK. Lorlatinib (the daily pill I take) jams itself into it and shuts it down. It's working. But resistance isn't an if, it's a when. The tumor mutates the pocket and the drug stops fitting.
So Jan started modeling it on his own time, burning his own tokens. He ran AI models against ALK and lorlatinib, mapping where the known escape mutations land.
And what did he find? Most of them hit right in the drug's pocket, swapping small pieces for bigger ones that physically block the drug. That's the good kind of bad news. A pocket problem is something you can design around.
But the normal route to a new drug is ~2 years and ~$4-5M just to be ready for human testing. Jan's dream is getting a medicine to one patient in ~1 month.
I'm not taking a homemade molecule while lorlatinib works. But if it ever fails....shit...I've got a guy!
I started posting actively on X just a few weeks ago and it has brought me together with the most amazing, generous people!
SpaceAix retweeted
Ne vous sentez JAMAIS gêné.e d’aller à la pharmacie demander un conseil pour quelque problème de santé que ce soit.
On ne peut pas toujours vous apporter une solution nous-mêmes, mais il y a une chose que l’on peut faire : vous orienter.
- Est-ce que votre problématique peut être traitée par vous-même ?
- Est-ce que ça nécessite un avis médical dans la journée ou bien ça peut attendre quelques jours ?
- Est-ce que ça nécessite d’aller aux urgences ?
Ça fait partie de notre boulot d’évaluer la situation et de vous orienter au mieux et on le fait chaque jour.
SpaceAix retweeted
I'm 52 years old. I have terminal Stage IV esophageal cancer. And my life has become something I never could have imagined.
I have metastatic adenocarcinoma with signet-ring features. It's spread to my liver, lymph nodes, stomach and peritoneum. The surgery that was supposed to potentially save my life was aborted when they discovered it had already spread.
I've been through chemotherapy. I've had a stent shoved down my esophagus just to help me swallow. I've lived with a feeding tube. I've had to rethink something most people never give a second thought to: eating.
A cheeseburger. Pizza. A normal meal with my family. Things that used to be completely ordinary have become things I miss.
Every meal is a calculation. Calories. Protein. What can I swallow? What will hurt? What will stay down? How much can my stomach tolerate?
I deal with nausea, abdominal pain, strange sensations throughout my torso, swallowing difficulties, and the constant uncertainty of what is happening inside my body.
I monitor blood markers. I read CT scans. I research clinical trials. I look at experimental treatments and scientific papers, trying to find something, anything, that might give me more time.
And there's a particularly cruel part of terminal cancer that people don't always understand:
You can look relatively healthy. You can walk every day. You can laugh, read, have conversations, research things, and make plans. Meanwhile, you know there's an incurable disease growing inside you.
You become acutely aware that the future everyone else takes for granted is no longer guaranteed to you.
I have a wife. I have children. I have things I still want to experience, conversations I still want to have, and memories I still want to make.
I've even started leaving little handwritten messages around the house for my wife to find someday. Things I want her to know when I'm no longer here to tell her.
I'm not writing this because I want anyone's pity.
I'm writing it because terminal cancer is so much more than a diagnosis or a statistic. It's an entirely different existence. It's fighting for your life while simultaneously trying to figure out how to keep living it.
I don't know how much time I have. Neither does anyone else.
But I'm still here. Still walking. Still researching. Still looking for treatments. Still trying to eat. Still making plans.
And I'm not done fighting.
If you're healthy, don't take the ordinary things for granted. You have no idea how extraordinary they are until they become difficult or impossible.
SpaceAix retweeted
We are at the beginning of a new and exciting era to be able to program our immune system in the body (in vivo). This new review @SciImmunology nails it science.org/doi/10.1126/scii…
SpaceAix retweeted
Almost every week a patient asks me: no mutation, I eat well, I don’t drink, why did I get #BreastCancer ?
Most of the time I don’t have a good answer, and I tell her it is not something she did. This week @JCO_ASCO published a Sister Study paper on forever chemicals. Women with higher #PFOS and #PFOA in blood drawn before diagnosis had more ER-negative breast cancer (HR 1.93 and 1.67).
It is a signal, not a cause. 17 PFAS were tested and one looked protective. And breastfeeding lowers PFAS levels and ER-negative risk, so I want to see how that was handled. But it reminds me how much we still don’t know about why.
Per- and Polyfluoroalkyl Substance Exposure and Breast Cancer Incidence in the Sister Study | Journal of Clinical Oncology ascopubs.org/doi/10.1200/JCO…
SpaceAix retweeted
“Stage 4 cancer" gets heard as a death sentence, but it isn’t one. It’s a description of location.
Staging answers a single question: where is the cancer? Stage 4 means it has spread beyond the organ it started in, and nothing more than that. It doesn’t tell you how aggressive the tumor is, what drives it or how long someone has.
We hear it as a verdict because for a long time it mostly was, and that has changed unevenly.
Metastatic testicular cancer is cured in around 90% of men, and advanced Hodgkin lymphoma is similar, both were near-uniformly fatal a few decades ago. Colorectal cancer that has spread to the liver or lungs can sometimes be removed surgically, with people disease-free a decade later. Metastatic melanoma used to kill within months and now has patients off treatment years on with clean scans.
Ofc, for several cancers, stage 4 remains incurable: Pancreatic cancer in that stage won't be cured for most patients despite recent progress. But incurable and untreatable are different words, and confusing them costs people time they could have had.
When you look up survival statistics, you are reading history: a 5 year figure published today describes people diagnosed seven to ten years ago and treated with what existed then. Where treatment has moved fast, that number is systematically pessimistic about the person sitting in front of me, because the patients living the current numbers haven’t been counted yet.
So the questions that matter aren’t about the number. What’s the molecular profile of the tumor, is there a targetable driver, is there a trial, can anything be removed or radiated?
Stage 4 is where the cancer is. It isn’t how long you have.
SpaceAix retweeted
🇬🇧❤️ WHAT AN INCREDIBLE WAY TO END AN EXTRAORDINARY WEEK IN LONDON!
Today, Braelyn received her 5th DCVax treatment with the wonderful Professor Keyoumars Ashkan at King’s College Hospital!
Prof. Ashkan was absolutely thrilled about the extraordinary week Braelyn has had in London. And apparently, word travels FAST! He already knew that Braelyn’s story had been shared in the House of Commons during Prime Minister’s Questions! 🇬🇧
But my favorite moment came when I mentioned Braelyn’s latest MRI, which showed NO EVIDENCE OF DISEASE. I had mailed him a hard copy and wanted to make sure he’d received it.
His response?
“I’VE SEEN IT! THE ENTIRE UK HAS SEEN IT!” 😂❤️
I just LOVE this man!
We had sent him and his wonderful assistant our “Because Gray Matter Matters” t-shirts after our last visit, but looking at these pictures, I think I may have seriously overestimated Prof. Ashkan’s shirt size! 😂
This brilliant, compassionate neurosurgeon has played such an important role in helping Braelyn access DCVax-L, and we will forever be grateful for his dedication to patients battling brain cancer.
From the halls of Parliament to another precious dose of Braelyn’s personalized cancer vaccine, what an unforgettable week!
Thank you, Professor Ashkan, for everything you do for Braelyn and so many other patients. You are truly extraordinary! ❤️🙏
#DCVaxForBrarlyn #BrainCancer #BraelynsFight
#DCvax
SpaceAix retweeted
So, I have a very significant decision to make. I haven't had my immunotherapy treatment for a few months now because of major surgery. The funding for this runs out soon and the rules are I'm not allowed to reapply. An additional problem is whether it is medically safe for me to resume as I've had two ICU admissions in the last year. Immunotherapy has kept me alive and controlled the cancer. But if I continue, I risk potential further toxicity from immunotherapy while I'm recovering from surgery, pneumonia and persistent atrial fibrillation. I want to avoid putting my body through another potentially catastrophic complication as I may not survive it a third time. If I stop, then I am facing a potentially irreversible treatment decision. I can't have radiotherapy anymore either as I have had my limit, I have never responded well to chemotherapy and surgery has been ruled out. It is an extraordinarily difficult decision, because neither option is without risk, and the consequences could be profound.
SpaceAix retweeted
Want to try some epigenome editing? Key reagents from this paper are available on @Addgene: addgene.org/Vijay_Sankaran/
Delighted to share our new work in @CellStemCell! Transient epigenome editing durably silences genes in human 🩸 stem cells and mature progeny, without changing 🧬. Congrats to @lrbzldz & our collaborators!
cell.com/cell-stem-cell/full…
SpaceAix retweeted
Faisons un petit recap des modalités de la vaccination grippe / COVID 💉
GRIPPE
- Vous avez reçu un bon de prise en charge par courrier ?
➡️ Le vaccin est pris en charge à 100% par l’assurance maladie.
L’acte de vaccination effectué par le pharmacien ou l’infirmier est pris en charge à 100% par l’assurance maladie si c’est en lien avec une ALD, 65% sécu et 35% mutuelle si pas d’ALD.
- Vous n’avez pas reçu de bon de prise en charge ?
➡️ Vérifiez avec le professionnel de santé qui vous vaccine, si vous faites éventuellement partie des personnes ciblées par les recommandations vaccinales.
En effet, la sécurité sociale n’arrive pas à cibler 100% des personnes concernées et donc il est possible que vous ne receviez pas de bon de prise en charge.
Exemples : femmes enceintes, entourage d’une personne immunodéprimée, personnes ayant un IMC > 40 etc….
Les enfants de 2 à 17 ans, même sans facteur de risque, peuvent également bénéficier d’une prise en charge.
(⚠️ pour les enfants de moins de 11 ans, il faudra une prescription d’un médecin sur un bon de prise en charge adéquat)
➡️ Si vous ne rentrez dans aucun critère de prise en charge, vous pouvez tout de même vous faire vacciner, sans passer par la case médecin !
Le pharmacien ou l’infirmier peut prescrire directement le vaccin pour les personnes âgées de 11 ans et plus.
Le vaccin seul coûte environ 12-13€
L’acte de vaccination coûte 7,50€
Soit ~20€ pour les 2.
Vous pouvez demander une facture pour votre mutuelle pour voir si elle prend en charge cette vaccination.
COVID-19
Il est également possible, si vous le souhaitez, de vous faire vacciner contre la COVID-19.
Pour cela, aucun papier n’est nécessaire, la vaccination est prise en charge avec sécu + mutuelle pour toute personne qui souhaite être vaccinée.
Il est possible de faire les 2 vaccins le même jour, ou bien de les espacer. C’est vous qui décidez.
Aucun délai minimal n’est à respecter.
Pour les modalités exactes pour la vaccination (sans RDV / avec RDV…), rapprochez vous du professionnel qui va vous vacciner.
J’espère que ça en éclairera certains 🙏🏻
SpaceAix retweeted
In oncology, a side effect is usually just damage. With immunotherapy, it is sometimes a blessing in disguise and evidence the drug is working.
A patient of mine has metastatic colorectal cancer. His scans are clean, complete remission, nothing left to see.
His tumor was something we call “dMMR”: it had lost its spell-check and piled up thousands of mutations, which made it look alien to his immune system, which is why we only needed a spark to light it up.
Thats what we did with dual immunotherapy. A decade ago, chemotherapy bought patients like him about a year. With immunotherapy we tend to see these cases with full remission even in stage 4.
Then his liver enzymes climbed: Immune hepatitis, his own immune system overshot and attacked the healthy liver. We paused the treatment and started cortisone watching the results almost on a daily basis. Thankfully they came down, the treatment is still paused.
Ideally we will never have to start it again. The immune system essentially has learned his tumor. That memory is why someone can come off treatment and stay in remission.
SpaceAix retweeted
I ran 38 mi on trail this Saturday, on no training. Right before, I cryopreserved my immune cells @withreservoir, which I’m proud to have helped build. My cells now cryopreserved below -150°C came from the same blood in the same week as the cells that carried me through the run
SpaceAix retweeted
📢 @GustaveRoussy et @TakedaPharma annoncent un partenariat scientifique destiné à faire progresser des programmes de #recherche innovants sur les tumeurs solides et les hémopathies malignes.
Communiqué de presse 👉 gustaveroussy.fr/presse/avan…
🤖 Made with AI
SpaceAix retweeted
📆 L’essentiel de l’#ESMO 2026 décrypté par les experts de Gustave Roussy.
Quels résultats présentés à l’#ESMO26 faut-il retenir ? Quelles avancées sont susceptibles de faire évoluer les pratiques en #oncologie ?
Le mardi 10 novembre 2026, à partir de 17 h, les experts de @GustaveRoussy proposent aux professionnels de santé une soirée de décryptage consacrée aux principaux enseignements du congrès de @myESMO.
Inscription gratuite et obligatoire 👉 gustaveroussy.fr/agenda/less…
