Dear Every Cure supporter,

Thanks to your support, we’re finding new uses for existing medicines and working to get them to patients faster than ever before. We’re excited to share some recent updates in the message below.

This work is particularly meaningful to me because it’s so personal. When I was in medical school, I nearly died five times from a rare disease before I repurposed a drug to save my own life. That experience inspired me to co-found Every Cure because no patient should suffer when an existing medicine could help them. 

In this newsletter, we’ll highlight the progress we’re making — for patients like Jameson, with partners like ARPA-H, and with supporters like Giorgos Tsetis — and show why this work matters. Thank you for being part of this journey with us.

David Fajgenbaum, MD, MBA, MSc 

Co-Founder & President, Every Cure

 


Unlocking hope for more patients: Jameson’s journey with Bachmann-Bupp Syndrome

For years, Jameson struggled with a number of challenges including not being able to walk or speak. Until he was 5 years old, his doctors didn’t have a name for what was happening to him. Then, he was diagnosed with Bachmann-Bupp Syndrome (BABS), an ultra-rare neurodevelopmental disorder caused by mutations in the ODC1 gene. With only about 20 known cases worldwide, treatment options for Jameson were extremely limited. 

Jameson’s mom, Kayla, soon connected with Drs. Andre Bachmann and Caleb Bupp, who suggested he start taking DFMO, a drug originally developed for African Sleeping Sickness. Within weeks, Kayla recalled seeing improvements. “Developmental progress. Slow, incremental improvements. More understanding. More communication,” she said. “He’s in fifth grade now. He uses sign language, an augmentative and alternative communication device, and some words — and he loves saying ‘hi’ to everyone. He loves remote control cars, swinging, bike rides, and cruising the wide aisles at Lowe’s in his wheelchair like he owns the place.”

Every Cure is partnering with Drs. Bachmann and Bupp, at Michigan State University and Corewell Health respectively, to help advance BABS research, find more patients that could benefit from this treatment, and navigate access and regulatory pathways so more patients can receive this treatment. “Every Cure is… opening doors that we never would have been able to crack open,” said Dr. Bupp. “It’s a hopeful and exciting time for all of us and, more importantly, our patients.”

(Photo courtesy Jameson’s family)

More information: Scientists explore new treatment of drug for rare disorder (Michigan State University)

Learn more about Jameson’s family’s story

 


Celebrating Rare Disease Day and the patients we’ll be able to help with a new phase of ARPA-H funding

In late February — during Rare Disease Week — we announced that we had been selected to receive up to $76M in additional funding from the Advanced Research Projects Agency for Health (ARPA-H) to support our efforts in generating preclinical and clinical evidence to advance the most promising AI-identified drug repurposing opportunities. 

This is the second phase of transformational support that Every Cure has received from ARPA-H. In 2024, ARPA-H funding enabled us to build our powerful AI platform and establish the rigorous processes needed to identify promising drug repurposing opportunities. According to Dr. Fajgenbaum, Every Cure Co-Founder and President, this next phase “will allow us to do the essential work of evaluating these potentially life-saving treatments in the lab and clinical trials, accelerating access to potential treatments for those who urgently need them.”

More information: Philly-based Every Cure Gets $76M in funding from ARPA-H for rare disease AI tool (The Philadelphia Inquirer)

 


Channeling success into impact

After building Nutrafol into the #1 dermatologist-recommended brand for hair wellness — and leading its successful acquisition by Unilever — Giorgos Tsetis found himself reflecting on things and asking deep questions. He shared with us: “I’m profoundly grateful that Nutrafol succeeded, not just because it created financial upside, but because it created perspective. It gave me the space to zoom out and ask: Where can I actually help? What suffering can we reduce? What futures can we unlock?”

That reflection led him in a powerful new direction.

In 2025, Giorgos launched his family office, Great Things™, and soon after made a generous $1 million donation to Every Cure — joining a growing community of supporters determined to unlock new uses for existing medicines and ensure that they reach patients in need. 

“What drew me to Every Cure,” he said, “is that it goes after the gap the system often leaves behind: rare diseases, overlooked patients, and promising uses of existing drugs that don’t fit traditional incentives. Pharma and the broader system aren’t consistently rewarded for pursuing what’s possible — they are rewarded for pursuing what’s profitable. But suffering doesn’t care about incentives, and neither should we.”

For the full interview, click here.

(Photo courtesy Giorgos Tsetis)

More information: Giorgos Tsetis built Nutrafol into a $3.5 billion brand. Now he’s investing in AI and backing social causes (CNBC)

 


Check out our Annual Report

In January, we released our 2025 Annual Report

Inside the report, you’ll read more about how Every Cure advanced its mission in 2025, combining AI, medicine, and patient-focused efforts to drive real impact. You’ll also meet patients whose lives have been transformed by repurposed medicines. Their stories remind us why this work matters. 

Thank you for your support as we continue working toward a world in which every drug is used to treat every disease that it possibly can so no patient suffers while a cure hides in plain sight.

 


Spreading the word, accelerating the mission

Over the past few months, we’ve been sharing Every Cure’s mission across leading forums, podcasts, and scientific convenings — helping bring drug repurposing into the mainstream.

Click the photos below for the full stories.

 

 

 

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