A New Outlook on Life With Sickle Cell Disease: Jimi Olaghere on The Long Run

Today’s guest on The Long Run is Jimi Olaghere.

His story will take your breath away.

Jimi was born with sickle cell disease. He suffered from severe pain episodes, fatigue and shortness of breath through much of his life. Then in September 2020, he enrolled in a clinical trial when he got the CRISPR-gene edited therapy known as exa-cel, or Casgevy, developed by CRISPR Therapeutics and Vertex Pharmaceuticals.

He was one of the first handful of people in the world functionally cured of sickle cell disease.

Today, Jimi is a 38-year-old technology entrepreneur and father of three who lives with his wife in Atlanta.

He now feels so good physically that he can play soccer, chase after his kids, and bring the kind of stamina to his work that he couldn’t before. All of this without the fear and anxiety that he might have a crippling pain episode that might send him to the Emergency Room. He was able to quit taking all the other medicines he had relied on for years.

For scientific entrepreneurs out there, hearing Jimi’s story will give you goosebumps. Creating medicines that transform the lives of patients – allowing them to fulfill their full potential – this is the stuff of dreams.

There’s more. Jimi is now a patient advocate. He wants to uplift kids with sickle cell disease who maybe haven’t gotten as many fortunate breaks in life. To this end, he is participating in the Timmerman Traverse for Sickle Forward.

It’s a biotech community drive to raise $1 million for Sickle Forward – an organization that advances access to newborn screening and basic treatment for kids in Africa. Jimi is part of this team of biotech executives and investors who are training this year to climb together in September to the summit of Kilimanjaro, the highest peak in Africa at 19,341 feet.

Maybe Jimi will go to the top. Maybe he will go part way. We’ll see. But the fact that he has a clean bill of health to even attempt such a thing is a tremendous testament to his determination to help others, and the stunning success of the treatment that altered the trajectory of his life.

I’m honored to have gotten to know him during this campaign.

If you’d like to donate to Jimi’s campaign for Sickle Forward, please CLICK HERE. 

Before we get started, here’s a word from the folks at Andreesen Horowitz’s Bio & Health team, and the producers of their terrific podcast: “Raising Health”

Imagine a future where technology can analyze your health data in real time, and where AI can match patients with the best treatments.

For discussion on all this and more, check out Raising Health, the chart-topping life sciences podcast from a16z Bio + Health.

Each episode, they dive into the heart of biotech and healthcare innovation to explore real challenges and enormous opportunities – of how drug discovery and development works, the way healthcare is delivered, and how lifespan itself might be engineered. Hear from distinguished guests like Greg Meyers of BMS, Benjamin Oakes of Scribe Therapeutics, and more.

Follow Raising Health wherever you get your podcasts.

Now please join me and Jimi Olaghere on The Long Run.