having a lot of feelings about the breakthrough drug for pancreatic cancer. I haven’t looked at the data yet. My uncle died of pancreatic cancer one week ago after being diagnosed just three months ago. wish a drug like this had been in time for him. F%#k cancer.

60 days sober today for the first time since I was 18 🥲 One day I’ll write a book about this challenging time of my life - surrounded by chaos and questioning my career and my integrity daily, all while prioritizing my sobriety. every day reaffirms that sobriety is the best choice for me right now.

Dr. Fauci came to Stanford for Medicine grand rounds and shared a few reflections I thought were worth passing on: The first was about Operation Warp Speed and the current state of the NIH. As you’ll recall the first mRNA vax was developed at record speed. Fauci atttributes that success to 4 factors

Big day today. Doing my PhD on developing #genomeediting #CRISPR therapies for my own #RareDisease and related conditions was the honor of a lifetime. This one is for the #marfan #marfansyndrome community 🩷

Scientists out there, how do you know you are becoming a better scientist? How do you know that your scientific struggles are actually making you better than when you started, versus hindering your growth? #ScienceSky #Science

this is the same agency that is being praised for its regulatory flexibility re: gene editing therapies. the good that they’re doing in the editing space shouldn’t make them immune from criticism and should not detract from the ways they’re harming our country’s health

weird outcome of early sobriety is I am taking on so many projects now to keep occupied. I bought a kitchen table off FB marketplace and was going to strip off the bad white paint job and redo the white paint. But while stripping I discovered the underlying wood/veneer is beautiful!

the CRISPR field really needs more patient-scientists-with-genetic-disorders ASAP. how do I go about making that happen...

reminding myself on this fine wednesday morning that the american health insurance system is designed for people like me to give up when trying to get help, so to spite the system I need to not give up!!

The #RareDisease community has lost a great advocate. John Hudson was a young man with EB, whose story I learned through the YouTube channel Special Books for Special Kids. Based on the videos I’ve seen, he seemed like a compassionate, resilient person who did so much for the EB community.

Look at the women at NASA. They are the ones pushing the boundaries of science, solving problems most people can’t even understand, and carrying this country forward, while our politicians right now posture and stumble through talking points. And they are doing it all with joy.👇

there seems to be some confusion, I did not do any work during my PhD that has led to the treatment of a child lol. I worked on therapeutic genome editing for hereditary connective tissue disorders, and now like 15 mice who would have had PXE do not because of me, that’s all😭

day 3 of postdoc: got asked several thought provoking and interesting scientific questions by some very smart trainees. Immediate response was “oh I am definitely not the person to ask about that”, only to realize I literally now am the person to ask about that 😬😬😬

tag urself I’m the mutation in a single gene that causes one of 5000 human diseases lol

First day of work!! Got my ID card and my email and scheduled meetings so I’ll call it a win. lucky to be here, honored as always to represent the #RareDisease community 🥲 #CRISPR

Okay so why was I the only one in the theater tonight who gasped when Ryan Gosling ran a centrifuge with two tubes in the whole thing, sitting right next to each other? Sorry was I the only scientist in the film society theater tonight??

showed up to my little apartment in Berkeley to discover it was covered with hundreds of flies 😭 thankfully it was deep cleaned today and it looks great now but I was making SO many TH Morgan/fly genetics jokes for the last 24h 😭 I’m calling apartment “the fly room” for obvious reasons

folks are forgetting jay bhattacharya’s reaction to the CDC attack. says a lot more than his empty words. these lies were cited by the shooter as his motive for firing 500 rounds at CDC staff and killing a police officer

Today is my last day in Philadelphia after five incredible years. Saying goodbye to my friends over the past week has been heartbreaking. I’ve developed a life I really love here. Here’s hoping I’ll be back some day.

took 11 hours but WOOHOO

wake up babe new *inheritance pattern for #MarfanSyndrome* just dropped! SO interesting. Familial #Marfan syndrome with an unaffected parent. The potential for trisomy FBN1 (would aorta and joints be extra strong?!) I love old-school #HumanGenetics. #Genetics pmc.ncbi.nlm.nih.gov/articles/PMC...

Now that I am packing up the last of my moving boxes, I am excited to share that I will be joining the @urnov.bsky.social Lab at the CZI-IGI Center for Pediatric CRISPR Cures at UC Berkeley @innovativegenomics.bsky.social as a Postdoc/Team Lead in just a few weeks!

We're collaborating with the Chan Zuckerberg Biohub Network to create the Center for Pediatric #CRISPR cures, which will bring personalized genomic medicines to children with rare diseases. Learn more https://ow.ly/X60p50YnzgT#CRISPR #RareDiseaseDay

easiest way to boost my mood is to call me Dr Lauren Testa, btw 😂 Thanks to all for your kind words about my talk. I felt so supported by the #RareDisease community today. #RDDNIH

This week's cover @thelancet.com

Emotions have been running high lately. Yesterday was my last day in the Musunuru Lab, and saying goodbye to my labmates and friends was heartbreaking. Our group is full of so many kind, brilliant scientists who made me a better scientist and person.

This piece by @jeneeninterlandi.bsky.social is one for the ages. The damage Donald Trump (under the guidance of Russell Vought) has done to biomedical research is profound and will be long-lasting. It is a national tragedy to be measured in the sick and the dead. www.nytimes.com/2026/02/23/o...

Update, my #RDDNIH talk is now at 2:20PM instead of 10:50AM this Friday, Feb 27! Live-streamed and in-person. Looking forward to it! #RareDisease #Marfan #CRISPR

as a #raredisease patient and as a biomedical scientist whose salary depends on NIH funding, i do not agree with 99.99% of the folks at HHS. but the plausible mechanism pathway announced today is a promising first step toward meaningful therapies for devastating genetic diseases.

excited to be giving a Rare Story at 10:50am at #RDDNIH! I don’t get to publicly speak about what it’s like to be a #RareDisease patient working on genetic therapies very often so I’m quite excited!

hola from paradise 🩷✨

the rollout of the mRNA vaccines was one of the greatest public health triumphs in history and the end result has been the all-around triumph of the antivax movement and I will never get over it

For both #RareDisease month and #MarfanSyndrome awareness month, I thought I'd share this article I wrote for the @ahajournals.bsky.social about being a patient-scientist working on developing genetic therapies for my condition and related conditions.

happy Marfan awareness month from me and my now partial weight bearing left knee almost stuck the move though, but my leg completely crumpled in the fall

The scale of the loss is unimaginable. www.science.org/content/arti...

Alex Pretti’s coworkers take a moment of silence this morning

This is my favorite part of my #PhD defense presentation, my acknowledgement to NIH where I started my scientific career. I am proud of myself for using my platform to speak out about the tragedy of science in this country. @standupforscience.bsky.social

Yesterday was perfect. My whole community came out to support me, and as I looked around at my closest friends and family during our four course dinner, I asked myself over and over “how did I get so lucky?” Dr. Lauren Catherine Testa, Ph.D.

I'm going to be sharing several projects tomorrow, including some unpublished Marfan work I did early on in my PhD. I learned a lot from the project, but therapeutically it didn't pan out how I'd hoped. At first I was almost embarrassed to publicly share a project like this but you know what?

it’s HAPPENING

In fencing (at least in high school and college club fencing), if the referee isn’t sure about a call, they can throw the point out. It’s frustrating but fencers tend to respect that more than making something up. I wonder if this could apply to other sports…

Look not to be all tin foil hat but idk if I like that ONE team in the nfl is acclimated to high altitude and the rest aren’t…

so proud of this team and this work!

Yeah I’m speechless not gonna lie

please let this be the season of the pitt where a young woman of completely average stature shows up to the ER with the worst chest pain she's ever had in her life and none of the doctors think it's marfan because she doesn't look like she has it, but it is and everyone examines their own biases

I am an approved adopter at a dog rescue in my city and the rescue posted three adorable black lab puppies today and I am genuinely devastated that I can't get one because getting a puppy three months before moving across the country is a terrible idea :( did i make the wrong career move

these PhD thesis defense stress dreams are something else….last night I had a dream that three girls from my college sorority changed my slides right before my talk because they wanted more pictures of themselves in my slides LOL

literally need to postpone processing the events of today because I still have not processed the trauma of the last year!!!

Defending my #PhD, “Therapeutic Genome Editing for Hereditary Connective Tissue Disorders”, three weeks from today on Friday Jan 23 at 11AM EST! please DM me for the Zoom link! Thankful to everyone whos supported me along the way🩷 I cried during my practice talk so you KNOW it’s gonna be good! 😂

Since McDermott is 7-1 without glasses I took my glasses off so now I can’t see the tv but I can hear the audio!!