Put down whatever it is you are doing and pick up the latest copy of the New Yorker, December 20-27, 2010. If you’re anything like me you’ll read the article entitled Mother Courage by John Colapinto and you’ll be moved. If I wanted to advocate for a better life for people born with congenital hyperinsulinism (HI) before I read this article, I now want to do nothing else.
The article profiles Pat Furlong’s herculean effort to save her children from early paralysis and death caused by the rare genetic disorder, Duchenne. Ultimately, she was unsuccessful in staving off their death but she was highly successful at building a Duchenne Research Empire and helping other children born with the disease. While a cure has not yet been found, Pat Furlong is responsible for improving the lives of people with the disease and for putting the disease on the map by bringing together the world’s leading specialists in the field, parents, and government entities. She has raised millions and millions of dollars to bring the world closer to a cure for Duchenne.
She is unorthodox in her methods to say the least. She is dramatic, convincing and extremely knowledgeable about the disease. And she is funny to boot. I love this quote: “Most researchers and physicians will do anything to avoid meeting distraught mothers…”
That quote got me thinking about how truly blessed we are in the HI world to have researchers and clinicians who choose of their own free will, with no arm twisting, to spend hours at our parent conferences meeting with parents, and teaching them about the disease and how to be patient advocates. I hope you read the article and are inspired by Pat Furlong to work with our wonderful HI community on breakthroughs to improve the lives of people living with HI.
Here is the link to the abstract of the New Yorker article:
http://www.newyorker.com/reporting/2010/12/20/101220fa_fact_colapinto
You can email me for a full copy, go to the newyorker.com to pay for a digital copy of the article, or buy a copy of the magazine at your favorite newsstand.
