Feature Story: “Genomics for the People”


  Three years ago, the Editor-in-Chief of Scientific American visited the clinic and offered me the opportunity to write a feature article for the magazine. When I was a young boy, Scientific American nurtured my curiosity and growing love of science. It was this magazine more than any other that started me on the path to becoming a doctor.Scientific American_Cover

The opportunity to write my personal reflections about the clinic was a privilege, affording me the chance to move other young people toward a career in the healing arts and help them glimpse its special sorrows and joys.

I am delighted to share a story woven together by the many contributions of dedicated parents, colleagues, and collaborators. But most of all, the story is about patients and the people who care about them – they inspire us to extend the limits of imagination in ways that reshape how we think about health.

The “web exclusive” is free by clicking the magazine cover to the right. You can purchase a copy of the full article online now or on newsstands the week of Nov. 23.

Thank you to all who make this work possible – the clinic depends on your goodwill and financial support.  I hope the article honors the special covenant we share.

Yours Sincerely,

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Kevin A. Strauss, MD

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Photographs used with permission by Grant Delin


A Handbook for Rare Disease

As CSC discovers new disease and uncovers breakthroughs on existing conditions, our clinical team faces a growing challenge: How do we provide parents with the best information available to care for children with complex medical needs?

CSC expanded the popular “Family Education Day” series two years ago to cover more diseases and touch more families. We now hold an average of 10-12 education days per year where families, clinicians, and researchers come together in common purpose.

Yet, question and answer sessions often reveal more questions than answers for families with vulnerable children.

The CSC team dreamed of a handbook format that could be replicated for the most common disorders treated at the clinic. The handbook could serve as a vital reference guide, empowering parents with quick answers to their child’s care that are grounded in the most current clinical guidelines and research findings. Thanks to the Howard Hughes Medical Institute, such a handbook came to life this year for a disease called congenital adrenaHandbook - Front Coverl hyperplasia or CAH.

We are LONG overdue in sharing this wonderful news, and Franklin & Marshall College wrote a piece last April as the project was developing: http://www.fandm.edu/news/latest-news/2014/04/14/from-classroom-to-pressroom-students-pen-handbook-on-disease.

For now, the book can be obtained through CSC or Franklin & Marshall, but the team hopes to make it available for purchase online.

Like so many collaborative projects between CSC and Franklin & Marshall, undergraduate students made the crucial leap to solving real-world problems – a powerful lesson in application that will help them no matter their chosen field.

CAH handbook 5_15 (dragged)“There is no greater joy as a doctor and educator than to see bright young students interacting with the patients and families we serve, tackling complicated problems and building trust. We could not have asked for a better outcome for our students and families,” says Dr. Strauss.

MANY thanks go to Professor Ellie Rice, Carey Sentman, Mandi Tembo, and to all the other students who worked tirelessly on the book. Most of all, we thank the families who help to make this work possible!