7 yrs ago, I began testing a treatment on myself with the hope that I could make it to our wedding day. Today, we celebrate 7 yrs in remission, a life together with our sweet Amelia, &
#ChasingMyCure
coming out in paperback.
I got COVID19 a few weeks ago and based on the clinical trial data in support of metformin being able to lower the risk of long COVID, I decided to take a 2-week course. My COVID symptoms improved rapidly & 🤞 long COVID risk should be about 41% reduced…
Was such an honor to deliver the
@ASCO
Opening Address. I shared some thoughts about my talk and 5 key messages while receiving my monthly infusion. It felt like a fitting time to share about being a patient-physician-researcher-caregiver-advocate
#ASCO20
#ChasingMyCure
So excited to share that
@CFajgenbaum
, Amelia, and I welcomed the newest member of our family into the world on Friday! David Carter Fajgenbaum is healthy and so sweet. Caitlin is doing well and we’re so excited (and tired)!
Metformin has also been shown to reduce viral load, potentially being able to limit the contagiousness of SARS-CoV-2. Are other people taking metformin when they have acute COVID?
It’s hard to believe that today marks ten years since I walked down the hall from my med school exam to the hospital’s emergency department. I knew that whatever was ailing me was bad & that I wouldn’t likely survive.
Today marks 100.00 months that I’ve been in remission on sirolimus—the drug I identified as promising & tested on myself!
If you’ve read
#ChasingMyCure
or asked me how long I’ve been in remission, you’ll know I always share the length of my remission in fractions of months…
My heart is broken with the passing of my brother-in-law
@ChrisCNC
. He was the brother I never had & the best husband/dad. You battled
#ALS
with so much strength over the last 5 yrs. I’ll keep pushing with everything Ive got to
#EndALS
& other rare diseases like it. Love you, bud
My doctors gave me a 1 in a million chance to find a cure to my disease.
To make things worse, I didn’t have a billion dollars and 10 years to develop a new drug from scratch.
My only hope was to find a drug that was already FDA-approved that I could repurpose for my disease.
After relapsing on the only drug in development for my rare disease, my doctors told me ‘We’ve tried everything, there’s nothing more that we can do.’
To make things worse, I didn’t have a billion dollars and 10 years to develop a new drug from scratch.
My only hope was to find
I’m so thrilled that
@NEJM
published our
#CytokineStorm
paper today! As a physician-scientist dedicated to curing CS & a patient who has nearly died 5 times battling
#Castleman
cytokine storms, Im hopeful this work will help patients like me
#ChasingMyCure
Despite these challenging times and my lab’s laser focus on
#COVID19
, I had such a great 35th birthday today with
@CFajgenbaum
and Amelia. Even if she made me sit in the refrigerator with her... actually especially since she made me sit in the refrigerator.
#BossBaby
Feeling really grateful today for everyone that has supported me as I just learned that I received tenure from
@Penn
. This was never the goal—its always been to unlock disease mechanisms & save lives. But I’m so thankful for
@PennMedicine
’s support & commitment!
#chasingmycure
I am beyond honored to be named the 2023 Philadelphia Citizen of the Year by
@thephilacitizen
.
This recognition is a testament to our amazing team's work and the support that so many of you have shared with us!
It has been the honor of a lifetime to work with our amazing
I have loved hearing about how Chasing My Cure has been a source of hope during this difficult time, and I was thrilled to learn that Chasing My Cure became a National Bestseller in May!
#chasingmycure
#nationalbestseller
While battling for my life in the ICU, a seemingly minor symptom caught my attention amidst the life-threatening failure of my vital organs.
Small bumps, known as blood moles, emerged on my chest and shoulders during my relapses.
This observation became a critical piece of my
I’m so excited to share that I just crossed 10 years in remission!
After nearly dying five times in three years and being told there were no more treatments for my disease, I never could have imagined ten years ago that I would be alive today.
I could never have imagined that I
As someone who has nearly died 5 times from Covid19like cytokine storms & lives knowing I could relapse any day, my journey & the lessons I shared in Chasing My Cure feels so relevant right now.
We are incredibly honored to receive this transformative funding from
@ARPA_H
This funding comes at a pivotal time, allowing us to scale our approach across diseases to pioneer new treatments for millions of people around the world without options.
Here’s to chasing cures at
Every Cure to Receive $48.3M from ARPA-H to Develop AI-Driven Platform to Revolutionize Future of Drug Development and Repurposing
Read the press release here:
Thanks so much, Coach Moorhead! Football helped prepare me for the pain and struggles I would face in the ICU. I’m thankful to have played under you and learned from you. I’ll keep fighting and
#ChasingMyCure
After nearly dying 5 times, my former Gtown QB
@DavidFajgenbaum
identified a drug that's saving his life & others with
#Castleman
disease. Read his story of redemption & lessons he learned about living in
#ChasingMyCure
:
Today marks 11 yrs since Friday the 13th of August when I was first hospitalized for a mysterious illness.
I knew I only had days left but began
#ChasingMyCure
& found a drug that’s saving my life. I learned so many lessons & wrote
#ChasingMyCure
to share them with the world!
Happy, happy birthday to my sweet Amelia (aka Pookie Marie, Monkey Magee, Pookie Magoo)! I can’t believe you’re two! You make me so happy. I hope to one day be able to make you as happy as
@Blippi
does. And I’ll keep
#chasingmycure
so I can be with you for as long as possible.
Last week, I had a PET scan to look into my Castleman disease, and also to determine whether I’d had a recurrence in my liver cancer.
Great news, the scan came back completely clear and I’m so thankful for that.
But it also reminds me that we have so much work to do and at
If you’re hoping for a certain outcome tonight, but you haven’t voted, please vote. As someone who’s alive bc I turned my hope into action even when the likelihood of having an impact was extremely low, I’ve learned that hope isnt a passive concept.Its a choice &a force
#vote2020
It feels strange to say “Happy
#RareDiseaseDay
” On one hand, there’s nothing happy about 7,000+ devastating diseases with <5% with
@US_FDA
-approved therapies. But on the other hand, this is the most AMAZING community of people who’ve taught me so much on my journey
#ChasingMyCure
This week marks 6 yrs since my last
#Castleman
relapse/dose of chemo! I didn't think I would make it to Caitlin & I’s wedding or ever have a child. I didn't know if there was a drug that could save my life. But by turning my hope into action & following a few key lessons...
Thank you
@CNN
&
@r_prior
for sharing about my battle to
@CureCastleman
for me & thousands of other
#Castleman
pts & accelerate cures for other diseases. I wrote
#ChasingMyCure
to share my journey & lessons learned about living from nearly dying 5 times.
After David Fajgenbaum suffered repeated life-threatening relapses of Castleman disease, he became laser-focused on trying to save his own life. He pioneered a new treatment and an approach to drug research that could help others with rare diseases
Huge news! The drug Xolair, which is approved for allergic allergy 20 years ago, has now been repurposed and is now approved for food allergies.
A team at the NIH actually approached the drug company that makes Xolair, Genentech, and they decided to partner a few years ago to do
Early on in my life I always thought there was a “they” looking for cures across all diseases. Unfortunately I was wrong.
In my book I call it the Santa Claus theory of civilization: that for every problem in the world, there are surely people working diligently—in workshops
What a decade! From my last rites in 2010 to fighting back against
#Castleman
disease btwn relapses, “I do” in ‘14, Amelia in ‘18, & sharing my journey
#ChasingMyCure
in ‘19. Here’s to cures for CD & many more diseases next decade!
#overtime
#hopeintoaction
Wow, just wow. A meta analysis in
@NatureComms
combining all trials of the effectiveness of hydroxycholorquine in
#COVID19
finds that hydroxychloroquine is associated with increased mortality in
#COVID19
patients... 😧
Happy World Castleman Disease
Day!
#WorldCDDay
I hope you'll RT to help to spread the word about
#Castleman
disease, a deadly cytokine storm disorder at the intersection of autoimmunity and
cancer that thousands of patients are battling…
This photo brings back so many emotions. It was right when I was starting to have my 4th relapse and was told that we were out of options. I had my dad shave a faux-hawk, because I always wanted to have one and my hair was gonna start falling out from the 7-agent chemo. I was
@dltrr_
My PCP prescribed it for me after I shared the randomized controlled trial data with him.
My wife (who is not a physician) separately asked her doctor and sent the paper from the clinical trial to her doctors nurse and was also prescribed it when she had acute Covid as well.
Im so excited to announce that Chasing My Cure will be available in paperback on Jan 26th! Ive loved hearing from readers around the world about what its meant to them & how its made a difference in their lives! I’m also so proud that it has 5⭐️ on Amazon from over 250 reviews!
Huge News! AI finds link between Viagra and Alzheimer’s disease!
A recent study suggests that Viagra could be a key player in Alzheimer's treatment, thanks to its ability to modulate genes associated with the disease.
The study's findings are compelling, indicating a
Huge news! A drug that doesn't even work on the brain might be a treatment for Parkinson’s disease!
A study came out that patients with Parkinson's disease experienced improvement on their symptoms when taking a GLP-1 agonist.
This drug similar to Ozempic works directly on the
As someone completely amazed by
@DrEricDing
and the incredible
#COVID19
work that he does, I’m so honored and thankful for his comments below and help with spreading the word about our CORONA project and
#ChasingMyCure
!
David is a genius of our generation. As a doctor and patient, he discovered the cure to his own disease w/ no prior cure... & saved his own life! Now he’s trying to find one for
#COVID19
. He’s the real deal- or else he wouldn’t still be here. My friend & hero
@DavidFajgenbaum
.
While we have been studying this
#CytokineStorm
for the last eight years to understand
#CastlemanDisease
and the immune system-we never thought that a cytokine storm would be the most deadly aspect of the worst pandemic of our lifetimes.
#chasingmycure
#COVID19
Hope cannot be a passive concept. It’s a choice and a force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action.
While battling for my life in the ICU, a seemingly minor symptom caught my attention amidst the life-threatening failure of my vital organs.
Small bumps, known as blood moles, emerged on my chest and shoulders during my relapses.
This observation became a critical piece of my
Super excited to share that our work discovering CXCL13 as a novel biomarker in idiopathic multicentric
#Castleman
disease is out now in
@NatureComms
! I nearly died 5X from iMCD during med school--this biomarker could have helped prevent those close calls
A cancer patient’s life was saved by a repurposed drug that was hiding in the medical literature for 3 years!
In 2016, Michael came to our center at Penn having been told he had three months to live.
We ended up leveraging a tool that we'd built to look back at previous
@AmbientSynthy
Would have died from
#Castleman
disease at 25 years old. Spent months in critical condition in the ICU… that would have been it. Thanks to modern medicine and an amazing team
#ChasingMyCure
, we identified a drug that is saving my life.
One of the world's most deadly childhood cancers may finally have a cure! Please share this story and message of hope!
A patient is now alive more than five years later on a new version of the drug that's actually saving my life as well.
Though 98% of kids with this horrible
Ozempic repurposed to treat a rare brain disorder!
Just recently a patient went to to share that they have been taking Ozempic to treat their idiopathic intracranial hypertension and no longer have debilitating headaches!
This is critical to
@EveryCure
's
It's not uncommon to find 15, or even 50, different organizations dedicated to a single rare disease.
This is without a doubt holding the rare disease community back.
The reality is that compared to more common diseases, rare diseases already face significant hurdles in
1M views,
#1
story on
@cnn
& over 10,000 users accessed our CORONA project database, the world’s only database tracking all drugs being used against COVID19. So thankful to our amazing team that is working tirelessly on this critical resource in the global fight against
#COVID19
Big news! A skin drug has been shown to be wildly effective for one of the deadliest conditions on the planet.
Dupixent, a drug initially developed for atopic dermatitis, has now been repurposed for COPD, a deadly lung disease that is one of the leading causes of death for
Like everyone, I've been bracing for
#COVID19
impact & heeding warnings, but a few things just hit me re: 1) the COVID19 'cytokine storm' 2) that immunosuppressed/comorbid (& elderly) are highest risk & 3) the fear we all have of ourselves or loved ones getting struck suddenly
I almost died five times before discovering that the cure to my rare and deadly disease was just a couple blocks away in my neighborhood pharmacy.
It begs the question, what other hidden cures are sitting on the pharmacy shelf waiting to be unlocked?
#MedTwitter
@EveryCure
My mom passed away from brain cancer when I was in college and one of the most important lessons she taught me was in the midst of tough times, don’t just wait for a silver lining – create it.
Whether it’s battling a rare disease or facing life’s hardest challenges, it’s about
Thankful for President
@BillClinton
’s support of our critical mission to unlock the full potential of existing
@US_FDA
approved medicines to treat every disease they possibly can!
Let’s unlock
@EveryCure
!
Fascinating interview with my
@ClintonGlobal
partner and fellow Hoya
@DavidFajgenbaum
about his new nonprofit
@EveryCure
, which repurposes existing drugs to fight other diseases. He saved his own life this way and wants to help millions of others.
What a year it has been since Chasing My Cure came out. It has been so amazing to hear how
#ChasingMyCure
has inspired readers, see it reach National Bestseller status, & observe the awareness raised for innovative ways to chase cures.
When I was diagnosed with Castleman Disease I was scared. But I understood you can choose the fear you face. The first being the Santa Claus theory of civilization, where you are like a kid waiting for a miracle. Or the second, the type of fear that forces you to act.
Our goal: identify all drugs being
#repurposed
against
#COVID19
and detect signals of activity! We rallied a team of 30 💪volunteers to review 2500+ papers in 11 days & extract data on 100+ drugs already tried for COVID19 in the first 5,000+ patients...
I’m so excited that
#ChasingMyCure
is available TODAY so that our message of hope can be shared with the world! I learned so much about living from nearly dying five times, lessons that I want to share with YOU so you can turn your hopes into action.
Very productive trip to the office! Lots of things were figured out for Castleman disease &
@everycure
! Amelia drew some really good circles/immune cells & Baby D did some important paperwork & reading! And some good collaboration happening in the last video. 😂
#chasingmycure
A cytokine storm disorder tried to kill me. After finding a treatment that’s saving my life, I now dedicate my life to unlocking new treatments for other patients with these disorders like
#Castleman
disease.
#chasingmycure
Huge News! The first-ever gene therapy was approved for sickle cell disease!
Sickle cell disease, a debilitating condition affecting individuals worldwide, now has a potentially curative therapy. This one-time treatment offers patients the chance to live a full life, free from
Incredibly proud of my Lab, my colleagues, &
@CureCastleman
’s study in
@jclinicalinvest
! Thankful to
@NIH
for
#R01
funding to make this possible. 1st novel drug target in 25 yrs for iMCD led to precision therapy in 3 pts. Important step forward but lots of work to do!
#Castleman
Lots of questions below about my feelings on repurposing & off-label use. I repurposed a drug to save my life 10 years ago during med school, shared about it in
#ChasingMyCure
(link below), & have dedicated my life to repurposing drugs through
@EveryCure
.
TODAY:
@DavidFajgenbaum
was diagnosed with Castleman disease when he was a 25-year-old medical student. After nearly dying in the hospital several times (and being told there was no cure) he decided to try and find his own treatment.
#Repurposing
drugs for
#COVID19
is our best opp to save lives asap. IL-6R blocker tocilizumab is being used (bc COVID19 ignites
#Castleman
-like cytokine storm). As I shared in
#ChasingMyCure
, toci was developed by my friend/colleague Kazu Yoshizaki for CD & approved in Japan...
Deadly hyperinflammatory disease finds curative treatment from a repurposed drug!
DADA2, a rare hyperinflammatory condition, tragically forces children to endure strokes at a young age, often leading to premature death in their teenage years.
Without a single clinical trial,
My doctors gave me a 1 in a million chance to find a cure to my disease.
To make things worse, I didn’t have a billion dollars and 10 years to develop a new drug from scratch.
My only hope was to find a drug that was already FDA-approved that I could repurpose for my disease.
I can’t believe it’s been 10 years since this picture was taken at Global Rare Disease Day at the
@NIH
. I had been out of the hospital for about a month taking Sirolimus, the drug that’s saving my life.
Raj was taking 6-months off of med school to help grow
@CureCastleman
along
So excited to see our paper on the most effective treatments for idiopathic multicentric
#castleman
disease pre-published ahead of publication in
@BloodAdvances
!
@CureCastleman
I cant put into words what it was just like to meet & enroll the 1st patient into a clinical trial of sirolimus for treatment-refractory iMCD I ID’d this drug while
#ChasingMyCure
& began taking it myself, now we’re
#ChasingOurCures
My 20-month old Amelia helped me to realize this AM that the immune response in
#COVID19
is kind of like Goldi Locks. Not too hot, not too cold. If you suppress it too much w/ tx, you can’t control virus/viral load skyrockets. If you boost it too much, you get a cytokine storm...
Just as
@bsw5020
said, none of us wanted to be a patient advocate. But it is an honor & I also feel a responsibility to do what we can to fight back against disease. Not because we know we’ll win, but because we know we probably won’t & we want to go out swinging for all of us.
I never wanted to be a patient advocate—I don’t think any of us did. But I am. I wear that title with true pride as I walk in the shoes of giants, fight along side some of the bravest people I’ve met and have the chance to change the world for those to come.
Good night moon.
Our 1st paper from our CORONA project was published today, reporting all treatments for the first 9,152 published
#COVID19
patients. Amazingly 115 different drugs were given. I'm so grateful for the hard work that so many volunteers put into this!
Horizontal thinking saved my life…
I didn't have a billion dollars or ten years to develop a new drug from scratch. My survival hinged on one critical strategy: identifying and repurposing an existing drug made for another disease to treat my own.
This approach isn't just a
Did you know there are 300 million people worldwide that live with the disease without a single approved therapy?
Even worse, the current health care system doesn't incentivize finding cures for these populations because they're often too small.
On this Rare Disease Day, we
It was such an honor to join
@EricTopol
on
@MedScape
's Medicine and the Machine Podcast where we discussed my journey
#ChasingMyCure
to now repurposing existing drugs to find
@everycure
. Click the link below to watch the full interview!
President Clinton once asked me, ‘What’s Your Dream?’
I had to pause because no one had ever asked me that before.
Then I said, my dream is to do what I did for myself but for millions of people around the world. I want to find new uses for all the drugs in your neighborhood