One of the benefits of being ACOG President is having a great platform to draw attention to important issues and opportunities in the world around us. Today I’d like to tell you about my friend, Dr. Scott Berns, his wife, Dr. Leslie Gordon, and their son, Sam, who are bravely dealing with something many of us know little about.
I have known Scott for many years because we have collaborated on a host of projects through ACOG and the March of Dimes. We both share a goal of improving maternal health care so that moms and babies have safe and healthy outcomes. This summer, Scott shared with me a very different project that he is involved in, one that is deeply personal and a true labor of love.
On October 21, HBO premiered the documentary “Life According to Sam.” The feature film is about Sam, Scott and Leslie’s 16-year-old son. Sam has one of the rarest genetic conditions in the world, a premature aging disorder called Progeria. It’s such a rare condition that most ob-gyns have never experienced it in their practices. “Life According to Sam” allows us to capture the essence of Sam, a resilient young boy who wants us to see him as he is, to engage in his delightful personality, and to work for a cure for Progeria.
In 1999, after Sam was diagnosed with Progeria at age two, Scott and Leslie established the Progeria Research Foundation (PRF). Since that time, they have raised awareness and identified other children with Progeria around the world. In this relatively short time period, they have progressed from increasing awareness to funding research to conducting clinical trials. Now, thanks to their commitment, there is hope for a treatment.
Since its inception, the PRF has provided more than $5 million in grants to scientists from around the world for research into the cause, treatments, and cure for Progeria. The organization also manages an international registry, maintains a cell and tissue bank for research, provides diagnostic testing for children who may be affected, hosts scientific conferences, and coordinates clinical drug trials at Boston Children’s Hospital.
Although the average life expectancy for children with Progeria is 13 years, Sam will turn 17 on October 23. This is all due to Scott and Leslie’s commitment to their son and other children with Progeria. I encourage you to learn more about the Progeria Research Foundation and its exciting work at progeriaresearch.org. “Life According to Sam” will be rebroadcast on the HBO network during the month of November.
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