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The specific purpose for which this corporation is formed is to provide near-term treatment options to gravely ill sufferers of amyotrophic lateral sclerosis (ALS), an immediately life threatening disease for which no FDA approved treatment is regarded as effective at changing patient outcomes. The ALS Emergency Treatment Fund, under license from pharmaceutical companies and with authorization from FDA, conducts Expanded Access treatment Programs (either on its own or in partnership with other parties) for products that are currently in ALS clinical development, for those patients whose physicians determine that the use of such investigational products is medically appropriate.
The ALS-ETF intends to conduct scalable EAPs that would allow a broad spectrum of current ALS patients the chance to participate in the study of the most promising investigational treatments that are in the clinic at the time.
There are roughly 35,000 ALS patients living in the US, and 600,000 worldwide. The ALS Emergency Treatment Fund is in a unique position of being able to increase the likelihood of survival for these patients, starting with those in the vicinity of research clinics who partner with us. ALS is a disease for which care providers and established opinion leaders offer very little hope. ALS-ETF has an opportunity to change the likelihood that the majority of current patients will ever gain treatment.
The majority of ALS patients do not meet the enrollment criteria for clinical trials, due to age, years since onset, past trial experience, or symptom progression. To address the unmet need for treatment options, ALS-ETF was built to fund and conduct Expanded Access treatment Programs (EAPs) for therapeutics that are concurrently in late clinical development.
- Jess Rabourn
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