Local nonprofit helping patients with ultra-rare diseases
The Carlsbad-based n-Lorem Foundation, a nonprofit that helps provide treatment options to patients with rare genetic diseases, is entering its second year and looking to expand its mission globally.
Stan Crooke, n-Lorem’s founder and CEO, said the foundation’s team serves as “middlemen.” It connects patients, some of whom may be the only person in the world who have a particular rare disease, to the development of treatments that are made free for them for life.
Crooke, adding that he’s dealt with patients with limited or no options for their rare diseases throughout his career in biotech, also said there was a moral imperative to work with the pharmaceutical industry to create options for those patients.
“Armed with the potential that we could do this, then it really became a moral question: Was there a way I could not do it? The answer of course was no, I had to do it,” said Crooke, who is also the founder and former CEO of Ionis Pharmaceuticals.
Developing treatment for patients with diseases so rare that they affect approximately 10 people worldwide is complicated, Crooke said, because “no one else has existed like this patient in the world before.” The lack of options can be frustrating for the patients and their families.
“A disease doesn’t affect a patient, it affects a family,” Crooke said. “It destroys a future and it changes the future of every member of a family, so I don’t know what more motivation a person could have. That’s why I’ve been motivated throughout my career.”
And the pharmaceutical companies don’t have as much incentive to develop a drug, which can cost billions over several years, if it won’t reap enough of a return on investment. n-Lorem wants to solve that problem through philanthropy. Founded earlier this year, the foundation has been fueled so far in part by contributions from Crooke.
“People do understand the gravity of the problems these people face,” Crooke said. “So we’re optimistic we’ll be able to meet the needs of these patients. My worst nightmare is being unable to treat the patient because we don’t have the money to treat them.”
Crooke said that early in his career, he contributed to the development of drugs to treat testicular cancer, which have helped make it one of the most treatable forms of cancer. Conditions he’s tackling through n-Lorem include a rarer, more lethal form of amyotrophic lateral sclerosis (ALS).
He added that “now it’s time to scale it up so we can meet the extraordinary demand we’re already experiencing.”
The n-Lorem Foundation currently operates in the U.S., but Crooke wants to be able to help patients all around the world. The main challenge is getting clearance from regulatory agencies in other countries.
The foundation will also begin more formal fundraising efforts in the year ahead.
“I think if I can provide a future for one patient at a time, I change the future of a family at a time,” Crooke said. “That to me sounds like a very very good way to change the world.”
For more information, visit nlorem.org.
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