Many Christians know the popular verse in James that gives us the definition of “true religion”: “To look after widows and orphans in their distress.”
But when C. Jimmy Lin – who is both a Christian and a world-class scientist — heard this verse, his training as a doctor and geneticist caused him to hear the word “orphan” differently than the rest of us. Lin worked in the world of “orphan diseases.” Orphan diseases are diseases that afflict relatively small numbers of people, so the search for the cures for these diseases don’t get the massive funds from governments, research groups, and corporations.
It’s hard to blame these institutions for investing in areas that can help the most people, and produce the greatest likelihood of success. But that still leaves, according to Lin’s estimate, more than 7,000 diseases with little or no research funds. These diseases afflict more than 350-million people worldwide.
That’s why Lin, motivated by his Christian faith and compassion for those who suffer from these orphan diseases, created the Rare Genomics Institute (RGI).
The Rare Genomics Institute uses crowd funding to help people with rare diseases sequence their DNA. The price of sequencing one’s DNA has fallen dramatically. It took more than $3-billion and 15 years to sequence the first human genome. When John Stonestreet and I included Jimmy Lin and the Rare Genomics Project in our book Restoring All Things in 2014, the cost of sequencing our DNA had fallen to about $7,500. Today, the cost of a “draft sequencing” is about $1,000. RGI provides sequencing scholarships for people who have rare genetic diseases. In the first six months of 2017, more than 30 children had their genome sequenced with scholarships from the RGI’s iHope project.
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, virtually non-responsive as a four-year-old. Her doctors were not sure 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 flaw in a gene crucial to fetal development.
When John and I wrote Restoring All Things, we did not know the end of the story. We reported then that “A research team is looking into gene therapy for the girl and others like her who may be afflicted with a similar genetic flaw. While a cure was not yet available for Maya’s family, Lin’s team was able to confirm that Maya was not cognitively impaired.”
Since then, though, Maya’s parents and her doctors have designed therapies and adaptive technologies to help Maya learn and develop. Maya’s mother now maintains a blog chronicling Maya’s progress and the lessons she has learned that might help other families in similar situations.
Maya’s story is just one of many. To date, hundreds of people, mostly children, have been profiled and funded by the RGI site. (You can read some of those stories here.)
“The Bible is clear that we are to look after orphans,” Lin said. “Orphan diseases may not have been what the Bible was talking about, but if we can help cure some of these orphan diseases, we might be able to help a few orphans along the way.”
Editor’s Note: Dr. C. Jimmy Lin will be a speaker at this year’s Wilberforce Weekend, hosted by The Colson Center. The event will take place May 18-20. For more information, or to register, go to www.wilberforceweekend.org