The N-Lorem Foundation is Developing Treatments for Patients With Ultra-Rare Diseases

 

A recent article in the Encinitas Advocate heralded the dedication of Stan Crooke, n-Lorem Foundation’s CEO and founder. The nonprofit Foundation’s team acts as middlemen, working with patients who have extremely rare diseases and developing treatments specifically for them.

Crooke explained that the group focuses on patients who may be one of ten in the world or even the only patient in the world with a particular genetic disease.

Finding treatment at that level is frustrating for patients and their families.

Crooke was very familiar with the plight of patients who had few or even no options for treatment.

He is aware that there is a lack of incentive to develop a drug for a rare disease that would cost billions yet generate a meager return on investment.

Crooke came to the realization that he had to do something and that something would be through philanthropy and it would be free to the patient for life. Initially, that philanthropy was provided by Crooke. But in the three years the Foundation has been in existence, Crooke has found that people do understand the problem ultra-rare disease patients face and are willing to help.

Patient Applications Arriving Daily

Crooke is pleased with the Foundation’s track record in helping clinical investigators treat rare disease patients. The Foundation has been averaging one or more applications for treatment each week. The group has been able to treat a rather significant number of patients thus far and is eyeing global expansion. Efforts for more formal funding will begin in the near future.

A Background in Biotech

Crooke has worked in the biotech industry for thirty-five years and was the founder of Ionis Pharmaceuticals. Crooke was also part of a team that developed drugs to treat testicular cancer. It has now become a treatable form of cancer.

Currently, through the n-Loren Foundation, Crooke is working on the development of a drug for amyotrophic lateral sclerosis (ALS).

Hope For a Better Future

Crooke expressed the sentiments of his associates at n-Lorem as well as his own. They are thrilled to be able to work towards treatments that will help patients with rare diseases and in doing so help their families.

You are invited to visit the Foundation’s website:  nlorem.org.

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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