Jan 8, 2016 • 16M

#346: Big Job for 1 Man: Save 200M Children from 7k Rare Diseases

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Some of the world's great changemakers join host Devin Thorpe to share leadership lessons you can use to increase your impact.
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Read the full GoodCrowdinfo article and watch the interview here: http://bit.ly/1TFaY8k. Subscribe to this podcast on iTunes by clicking here: http://bit.ly/ymotwitunes or on Stitcher by clicking here: http://bit.ly/ymotwstitcher. The always cheerful Dr. Robert Selliah, founder of American MedChem, is deadly serious about finding cures that could save up to 200 million children around the world. He explains, “About 7,000 rare diseases are known and nearly 20 million children in the US and 200 million children worldwide have some form of rare disease. But for 95 percent of these rare diseases there are no effective targeted medicines. 30 percent children with rare diseases will not live to see their 5th birthday. Lack of medicines is primarily because it is not profitable for pharmaceutical companies to create medicines for these children – no market-based drivers.” Robert explains how far reaching the problem is. “In the same way, lack of profitability for pharmaceutical companies is the reason for the lack of medicines for nearly 500 million children in poor countries afflicted with neglected tropical diseases. But sick children need safe and effective medicines too, so they can get well and enjoy a healthy life. The big question is this: what is the best gift we can give a very sick child? Answer: healing medicines. This is what forms the core value of AMC.” So, Robert created AMC to solve these problems. “AMC as drug discovery and development technology organization creates and provides these essential targeted medicines necessary to treat children afflicted with rare diseases and neglected tropical diseases. AMC changes the status quo and fills the existing gaps in medicines to treat children, who currently have no medicines. Genetics technology is driving exact diagnosis of rare childhood diseases, but diagnosis without available treatment is useless for the children and families.” Undaunted, Robert keeps pushing. “AMC is set up to collaborate with research leaders in biology and genetics, carry out the critical discovery and medicinal chemistry research at AMC, and bring forward clinical candidates for testing and approval by FDA. Technology is readily available, talent is plentiful, the needs are huge; but we need the strong support of philanthropy to fund this work. AMC is currently seeking major philanthropic support.” “At AMC our commitment is to create healthy outcomes for children diagnosed with rare and neglected diseases. The status quo is unacceptable, because industry has left these kids out of the mainstream for reasons of profitability. We know that our vision can become a reality for sick kids by applying existing drug discovery technology to create very specific drugs for specific diseases. The age of precision medicine is here, and sick kids must benefit from this technology also,” Robert concluded. AMC is presently conducting a crowdfunding campaign on Fundly with a goal of $500,000. So far, he’s raised nearly $10,000 for this work, but there is a long way to go. You can help by clicking here to learn more. Read the full GoodCrowdinfo article and watch the interview here: http://bit.ly/1TFaY8k. Please consider whether a friend or colleague might benefit from this piece and, if so, share it.