Every Cure

09/09/2026

“When Marley was born, almost all of her hair fell out during her first bath in the NICU. I remember counting maybe thirteen strands left. We had no idea that would help lead us to an answer.

My pregnancy had been normal until I developed severe polyhydramnios. When Marley was born, she wasn’t breathing normally, and an MRI revealed a massive brain hemorrhage.

I spent that first year blaming myself. What had I done wrong?

Then we met Dr. Caleb Bupp. Genetic testing found a mutation in Marley’s ODC1 gene, but it wasn’t associated with any known disease. We were told to wait for science to catch up.

Eventually, Dr. Bupp connected with Dr. André Bachmann. Together, they identified what is now called Bachmann-Bupp syndrome and believed an existing drug called DFMO might help.

It had never been used for this purpose. We could do nothing or take a chance.

Marley was four when we chose to take that chance.

Before DFMO, she was malnourished, had extremely low muscle tone, recurring pneumonia and painful cysts.

Then her eyebrows and eyelashes started growing. She sat independently. The cysts disappeared. The pneumonia stopped. She gained weight and muscle. She started feeding herself.

Seven years later, Marley just started sixth grade.

She’s funny, social, sassy, and loves being around people. She’s nonverbal, but she understands what’s happening around her and makes absolutely sure everyone knows she’s there.

When Marley was a baby, one doctor told me something I’ve never forgotten: “Never put her in a corner.”

We never did.

And now the drug that gave Marley so much of her life back is helping other children with Bachmann-Bupp syndrome too.

I used to wonder what impact my daughter would have on the world.

Now I know.

Genetic testing was ultimately the key that gave Marley’s family an answer. If parts of Marley’s story sound familiar, particularly the combination of hair loss and developmental challenges, families can talk with their doctor or genetic counselor about whether genetic testing may be appropriate.

They can also connect with Dr. Caleb Bupp and his team at Corewell Health to learn more about Bachmann-Bupp syndrome.”- Kelly, Marley’s mom

07/29/2026

Everything we do at Every Cure starts with one question: How can we better serve patients?

Too many patients are waiting for treatments that already exist because the medicines are inexpensive, off patent, and no longer profitable to study. As a nonprofit, Every Cure is able to pursue these overlooked opportunities because our success isn't measured by revenue. It's measured by the lives we can improve.

Our collaboration with Dr. Luke Chen on lenalidomide/dexamethasone for Rosai-Dorfman disease demonstrates what’s possible when AI and clinical expertise come together. By applying Every Cure’s AI-driven drug repurposing platform and scientific expertise to help prioritize this opportunity, we helped expand the appropriate use of lenalidomide/dexamethasone for patients with RDD, contributing to its recognition as a preferred treatment option in the NCCN Guidelines.

As Dr. Chen says, every physician shares the same mission: to use every tool available to better serve patients. We believe AI is one of those tools, helping uncover treatments that might otherwise be missed.

Because every patient deserves access to every possible treatment.

07/21/2026

We're excited to share that one of Every Cure's programs has reached a huge milestone.

Lenalidomide/dexamethasone is now a preferred treatment option in the NCCN Guidelines for Rosai Dorfman disease (RDD).

This milestone was made possible through a collaboration between Dr. Luke Chen and the Every Cure team. Using our AI powered platform, we systematically evaluated nearly 3,000 FDA approved drugs and identified lenalidomide as one of the most promising repurposing candidates.

Together with Dr. Chen's clinical expertise and research, we helped strengthen the evidence supporting this treatment, work that ultimately contributed to its inclusion as a preferred option in the NCCN Guidelines.

But getting a treatment into the guidelines is only part of the journey.

Now we need your help to make sure this information reaches the clinicians and patients who can benefit.

Here's how you can help:
• Share this post to your story.
• Send it to a hematologist or oncologist you know.
• Follow Every Cure as we continue working to identify overlooked treatments and help them reach patients around the world.

This is exactly why Every Cure exists. Not just to discover repurposed treatments, but to ensure those discoveries make a real difference in patients' lives.

Learn more by reading our press release by clicking the link below:
everycure.org/rdd

07/14/2026

*Had to follow this IG trend. No Netflix documentary is actually in the works*

Of the world’s 18,000 recognized diseases, only about 4,000 have approved treatments.

We know many of these diseases could be treated with many of the existing FDA-approved drugs.

But systemic barriers prevent this from happening. It’s just not profitable to pursue a new use for an existing drug, especially for rare diseases and the 80% of drugs that are already generic and inexpensive.

Until recently, it has also been logistically impossible to scan across the world’s knowledge of all drugs and all diseases to find matches.

So the system focuses on new drugs for profitable diseases, and no one has taken responsibility for systematically uncovering these hidden treatments. Until now.

is addressing each of the system’s barriers to find the best matches to save and improve lives.

05/27/2026

“My mom was covered in painful lesions from head to toe. Doctors kept walking into the room saying the same thing: ‘We’ve never seen this before.’

At first, they thought it might be cancer. She had lost a dangerous amount of weight, her body was overwhelmed with inflammation, and nobody could explain why she kept getting worse. My family went from hospital to hospital searching for answers while my mom’s health slowly deteriorated in front of us.

Eventually, after months of testing, biopsies, and uncertainty, doctors diagnosed her with a rare disease called Rosai-Dorfman Disease, or RDD. We had never heard of it before. And honestly, most doctors hadn’t either.

For years, we kept hearing different opinions from specialists across dermatology, infectious disease, and hematology, but nobody really seemed to know what to do next. Then we met Dr. Luke Chen.

Right away, we could tell he understood this disease differently. He told us about a treatment called lenalidomide and even helped my mom get access to it through compassionate care. Slowly, we started seeing changes. The lesions covering her body began healing. Her strength started coming back. She was finally getting pieces of her life back.

Today, she still deals with fatigue and carries scars from everything she’s been through, but she’s walking on her own again, grocery shopping, cooking, and doing the things she loves.
RDD changed our lives completely. But it also taught us how important it is to find doctors who truly understand rare diseases—and how life changing the right treatment can be.”

04/24/2026

Can Every Cure prioritize one disease over another and accelerate a cure on demand? It’s one of the most common questions we get.

The reality is that Every Cure is built to look across all 18,000 diseases at once, systematically scoring thousands of drugs against each one. We are not yet in a position to focus exclusively on a single condition by request. Instead, we work through this massive landscape methodically, reviewing more than 1,000 opportunities every month to identify the most promising matches between existing drugs and diseases.

What is powerful is the scale of this approach. There is a real chance we are already evaluating a potential treatment for the disease you care about.

In many cases, the answer is not starting from scratch. It is uncovering something that may already exist and accelerating it forward with the right data, resources, and collaboration.

This clip was recorded at the Peter Diamandis Abundance Summit. So grateful to be part of a community pushing the boundaries of what’s possible in healthcare and beyond.

04/15/2026