Science didn't understand my kids' rare disease until I decided to study it

Immense suffering abounds, and blocking our experience of it can even make it worse. Instead, awareness of the pain affords us choice – we have choices about how we respond. Pema Chodron consistently turns toward life, with its challenges and joys, with loving kindness. She gently invites the reader to go easy on themselves, all the while contacting the hard parts: disease, depression, death, and so on. She frees us to meet ourselves with love and compassion, and delivers her message with humor and ease.

Clear and enlightening writing about a complex subject that makes a statement fundamental to our shared humanity: we can be partners in discovery as we unravel the meaning of the human genome. Misha’s writing is accessible, entertaining, and inclusive. A great read for everyone who wants to understand genomics, and those who are doing it themselves.

This is a book about the essence of being, belief and love. Clare Dunsford described her son’s need to shield himself, because of being affected by Fragile X Syndrome, from “an unbearable intimacy”. Clare calls us to that intimacy, and at times it does feel almost unbearable. Not for the guilty, pull-at-your-heartstrings, sentiment that a child with special needs often evokes, but for the startling truth and authenticity with which she invites us into their lives. This liberates the reader to dive deeply and unleashes its abundant richness.

Sick with cancer or another condition? Getting the right care is difficult and costly. This is a phenomenal story of cancer from the earliest discoveries through to modern medicine. This magnificent analysis of the state of research and our healthcare system (or lack there of) is amazing, it could be called ‘The Emperor has No Clothes’. Mukherjee eloquently describes cancer, anthropomorphizing it so that the reader can speak to it and even live in it. His understanding of the all encompassing, complex, and insidious nature of the disease is beautifully elucidated. More, he views the people and communities affected by cancer as whole people and not just patients.

Cells. That is what Henrietta Lacks was reduced to — cells in use all over the world, even in outer space. Her life has become the archetypal story of misalignment of the research enterprise with the lived experience of people who suffer each day. Rebecca Skloot follows Henrietta and her family’s journey through her sickness and death of ovarian cancer, to the worldwide use of her cells, and on to her family’s inability to even get health services. Skloot lives in this story during the research and writing, and this adds a level of richness and color to the story. The injustice here is ghastly, and only the tip of the iceberg in the data hoarding that is the standard today in biomedical research.