SHARKTANK RESEARCH FOUNDATION wrote -
Sharktank Research Foundation is a 501c3 non-profit organization formed in 1998 and dedicated to promoting cystic fibrosis research (CF). To help CF patients manage their health more naturally, we created a nutraceutical supplement using multiple GRAS (Generally Recognized As Safe) ingredients that are freely available to anyone for use in foods and dietary supplements. After extensive research by our affiliated scientists and by cystic fibrosis patients, this natural supplement — called Indrepta — will be released in the next few months.
Although we cannot make specific medical claims, Indrepta contains ingredients to help correct and/or potentiate the defective cystic fibrosis protein (CFTR). CFTR correctors help CFTR move to the right place in the cell. CFTR potentiators help the CFTR proteins function better once they are properly located. Pharmaceutical drug correctors and potentiators of CFTR are among the most expensive drugs in history, and may have side effects.
The cost of Indrepta will be comparable to other natural supplements. A natural therapy similar to Indrepta is currently in clinical trials in the Netherlands for CF patients carrying the S1251N mutation, and will also undergo clinical trials in the Netherlands for its ability to enhance the benefit of existing pharmaceutical CF drugs. This is a praiseworthy effort on the part of the Netherlands government and their CF Foundation. Sadly, cystic fibrosis patients who live in countries with health services that do not cover the more expensive CF drugs are left behind. At Sharktank, we are dedicated to promoting patient-driven initiatives that are accessible and support the well-being of all cystic fibrosis patients. We now have an opportunity to rapidly crowdfund and crowd-develop natural therapies for other CF mutations using our group buying power and by sharing outcomes to find what works best.
Our immediate goal is to create the first effective and affordable crowdfunded and crowd-developed therapy. The CF community is active and tightly linked, and we believe we can lead a new public health movement. Current thinking is that combinations of multiple CFTR correctors and potentiators will be required for maximum benefit, and that CF mutations may vary in the combinations and amounts of ingredients required to restore maximum CFTR function. It is important to have participation of CF patients in this project in order to refine the supplements based on feedback. A second project coming to you soon will be a home test kit that will allow patients to measure changes in their own CFTR function in response to dietary changes and drug treatments.
Here’s how you can help. For each $50 contribution to this project, we will send you a bottle (one month's supply) of Indrepta as soon as it becomes available. Initially we can manufacture Indrepta in 1000 bottle orders. We will use donations to cover costs of manufacturing and to continue research to improve the product. Existing and new social media infrastructure will allow feedback by mutation.
New pharmaceutical drugs have worked well for only a small percentage of CF mutations, and clinical trials to develop treatments for less common CF mutations will never be cost effective for pharmaceutical companies. Our bulk buying power makes highest quality ingredients affordable. And, by working together we can develop and test natural therapies right now. Your participation makes all the difference.