A chronic illness that lingers gradually strips the normalcy from your life. It steals your dreams, your friends, your finances, and your loved ones.
Or an illness like cancer can suddenly attack and suck the life from you overnight. Instead of a rags-to-riches story, you endure the reverse tale.
If you get a diagnosis, you and your medical team can start working on a solution to those health problems with a real sense of understanding, right?
Imagine running medical test after test, brutal blood-draw after blood-draw, chasing clue after clue, and not getting the answers you need to help your suffering child.
The Might family never gave up. Finally a research team from Duke contacted them and asked them to join a study on illnesses with no diagnosis. Why? To see if exome sequencing, a cutting-edge DNA research, could lead to answers. Exome sequencing, a less expensive option, only deals with one small portion of a person’s genetic coding. In the case of the MIghts, researchers compared a small amount of DNA sequencing from their son’s DNA to each of his parents DNA.
About two years into the study, the Mights discovered that their son had a previously unheard of disease with no known treatment plan. He inherited an extremely rare glycosylation disorder caused by NGLY1 mutations. Precision medicine at work — so amazing! My hat is off to those researchers devoted to helping those with rare medical needs.
On with our (true) story. With a combination of perseverance, brains, grit, and social media networking, Matt Might went to work to find other NGLY1 victims.
Why? According to Seth Mnookin’s article (see link above) in The New Yorker, “… without additional cases, there was virtually no possibility of getting a pharmaceutical company to investigate the disorder, no chance of drug trials, no way even to persuade the FDA. to allow Bertrand to try off-label drugs that might be beneficial.”
Precision medicine doesn’t work without finding the precise drugs needed. What the Might family needed was a drug or drug combination that would be effective and currently FDA-approved to use for their son’s condition. Relief could not wait for years of drug-testing and research.
Enter Might’s viral blog post!
He did it! He found other sufferers with NGLY1 disorders. Most importantly, the Might family improved the quality of life for their son AND others with the rare NGLY1 disorder. Their research led them to FDA approved drugs within a few years.
It’s not the kind of precision achieved by AI, bots, or any computer-generated copy. I’m a firm believer that no robot will ever fully replace passionate human creativity! Technology should forever be a helper but not a replacement for the human touch.
Matt wrote from an intimate understanding of his son’s need. He also wrote his story from his heart — full of love, compassion, and urgency. His story, though technical at times, was not stuffy. I got choked up reading it. I cheered him on in his search. It sounded like a mini-stadium in my living room!
You need someone who cares about your business to write about your business — that’s heart.
Sharing his unique challenge in a personal way hooked those might also be facing some other sort of unknown genetic nightmare.
That’s what I’d love to do for your business today. You can reach me 443-362-8789 or email firstname.lastname@example.org.