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Caring for Orphan…Diseases

Many Christians know the renouned hymn in James that gives us the clarification of “true religion”:  “To demeanour after widows and orphans in their distress.”

But when C. Jimmy Lin – who is both a Christian and a world-class scientist — listened this verse, his training as a alloy and geneticist caused him to hear the word “orphan” differently than the rest of us. Lin worked in the universe of “orphan diseases.” Orphan diseases are diseases that trouble comparatively tiny numbers of people, so the hunt for the cures for these diseases don’t get the large supports from governments, investigate groups, and corporations.

It’s tough to censure these institutions for investing in areas that can help the many people, and furnish the biggest odds of success. But that still leaves, according to Lin’s estimate, some-more than 7,000 diseases with little or no investigate funds. These diseases trouble some-more than 350-million people worldwide.

That’s because Lin, encouraged by his Christian faith and care for those who humour from these waif diseases, combined the Rare Genomics Institute (RGI).

The Rare Genomics Institute uses throng appropriation to help people with singular diseases method their DNA. The cost of sequencing one’s DNA has depressed dramatically. It took some-more than $3-billion and 15 years to method the first human genome. When John Stonestreet and we enclosed Jimmy Lin and the Rare Genomics Project in the book Restoring All Things in 2014, the cost of sequencing the DNA had depressed to about $7,500. Today, the cost of a “draft sequencing” is about $1,000. RGI provides sequencing scholarships for people who have singular genetic diseases. In the first 6 months of 2017, some-more than 30 children had their genome sequenced with scholarships from the RGI’s iHope project.

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But RGI doesn’t stop there. It also works to create therapies for the genetic abnormalities it discovers.

For example, in Restoring All Things we told the story of Maya Nieder. In 2012, Maya was developmentally disabled, probably non-responsive as a four-year-old. Her doctors were not certain if she could even hear her parents. RGI posted Nieder’s story online, donors gave $3,500 toward the sequencing and Yale University contributed the rest. The sequencing identified a smirch in a gene essential to fetal development.

When John and we wrote Restoring All Things, we did not know the finish of the story. We reported then that “A investigate group is looking into gene therapy for the girl and others like her who may be cheerless with a identical genetic flaw. While a heal was not nonetheless accessible for Maya’s family, Lin’s group was means to endorse that Maya was not cognitively impaired.”

Since then, though, Maya’s relatives and her doctors have designed therapies and adaptive technologies to help Maya learn and develop. Maya’s mom now maintains a blog chronicling Maya’s swell and the lessons she has schooled that competence help other families in identical situations.

Maya’s story is just one of many. To date, hundreds of people, mostly children, have been profiled and saved by the RGI site.  (You can review some of those stories here.)

“The Bible is transparent that we are to demeanour after orphans,” Lin said. “Orphan diseases may not have been what the Bible was articulate about, but if we can help heal some of these waif diseases, we competence be means to help a few orphans along the way.”

 

Editor’s Note:  Dr. C. Jimmy Lin will be a orator at this year’s Wilberforce Weekend, hosted by The Colson Center. The eventuality will take place May 18-20. For some-more information, or to register, go to www.wilberforceweekend.org



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