Sickle Cell Patient Cured With CRISPR Summits Kilimanjaro, Setting World Record

Four years after being functionally cured of sickle cell disease with a CRISPR gene-editing therapy, Jimi Olaghere has set a new world record for patients with this chronic and deadly disease.

Olaghere, a 39-year-old business owner from Atlanta, became the world’s first patient with sickle cell disease to reach the summit of Kilimanjaro at 7:30 am Tanzania time on Sept. 16. It’s the highest peak in Africa at 19,341 feet above sea level.

Jimi Olaghere, technology entrepreneur, Dad, sickle cell disease patient advocate

Patients with sickle cell disease are at serious risk of complications and death in low-oxygen environments. Doctors advise patients to avoid elevations greater than 10,000 feet.

Olaghere was able to set a new high-altitude record on Kilimanjaro after being functionally cured in a 2020 clinical trial of one of the first CRISPR gene-editing therapies – Vertex Pharmaceuticals and CRISPR Therapeutics’ exagamglogene autotemcel (Casgevy).

“While this challenge was really difficult, it showcases the raw power of cell & gene therapies,” Olaghere said. “I went from being bedridden to standing atop the highest free-standing mountain in the world. This will no doubt bring hope to the millions suffering from sickle cell disease across the world. It’s paramount that we make gene therapies for sickle cell disease accessible.”

About 100,000 patients in the US have sickle cell disease, and an estimated 25 million people worldwide suffer from the disease in which red blood cells form crescent shapes that harden, clump and damage blood vessels. Those sickling events can lead to heart attacks, strokes, kidney damage and other potentially deadly complications. Patients regularly suffer excruciating pain crises that send them to the emergency room.

Olaghere has now been free of such pain crises for four years, since his infusion of Casgevy. He joined this Kilimanjaro expedition as part of the Timmerman Traverse for Sickle Forward. This expedition of 20 biotech executives and patient advocates raised $2.2 million to improve diagnosis and treatment of sickle cell disease in Africa, and to support sickle cell disease research at the University of Alabama Birmingham.

“Jimi’s accomplishment of reaching the roof of Africa will bring hope to patients around the world. It showcases the new heights that sickle cell patients can reach with emerging therapies,” said Alan Anderson, director of the comprehensive sickle cell disease program at Prisma Health in Greenville, SC and executive director of Sickle Forward, a nonprofit. “We are excited that the funds raised through this expedition will be a critical first step in our mission of advancing screening, diagnosis and treatment of sickle cell disease in Africa.”

Alan Anderson, physician-scientist, executive director, Sickle Forward

“As an advocate for sickle cell patients, I’m so excited about Jimi’s success and the continuing advances in treatment of sickle cell disease,” said Ted Love, chairman of the board of BIO. Love was a co-chair of the fundraising campaign, and a member of the team that reached the summit of Kilimanjaro.

All 20 members of the team reached the summit of Kilimanjaro together around 7:30 am Tanzania time on Sept. 16. The group was guided by Eric Murphy of Alpine Ascents International and a team of 10 Tanzanian guides.

For me personally, seeing Jimi reach the summit of the highest peak in Africa was exhilarating. It was the culmination of months of hard work and preparation.

His is an inspiring story of the human spirit, and the potential for biotech.

Most importantly, it will provide hope to millions of sickle cell disease patients around the world.

Timmerman Traverse for Sickle Forward on the summit of Kilimanjaro, Sept. 16, 2024. All 20 team members made it to the top.

Jimi Olaghere on the summit of Kilimanjaro, Sept. 16, 2024. Olaghere, 39, was functionally cured of sickle cell disease by an infusion of Casgevy in September 2020.

Members of the Timmerman Traverse for Sickle Forward on the final push to the summit of Kilimanjaro. Photo credit: Peyton Greenside.