Authors, Artists and Advocates: Creatively Sharing the Patient Story

Books: Our patient-advocacy shortlist

We’ve compiled a short list of must-read books for patients, advocates, caregivers⁠—frankly, anyone interested in the power of the patient voice. This list is far from exhaustive, but it provides an excellent place to begin.

 

A Series of Catastrophes & Miracles: A True Story of Love, Science, and Medicine

by Mary Elizabeth Williams

Purchase the book 

Learn more about author 

 

Chasing My Cure: A Doctor’s Race to Turn Hope into Action 

Written by Dr. David C. Fajgenbaum

Purchase the book online 

Read a New York Times article about Dr. Fajgenbaum

 

The Gift of Participation: A Guide to Making Informed Decisions about Volunteering for a Clinical Trial

by Kenneth Getz 

Purchase the book online

 

The Breakthrough: Immunotherapy and the Race to Cure Cancer

by Charles Graeber

Buy the book online

Read the Wired article

 

Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them

 

By Gina Kolata

Buy the book online

Read the New York Times article

Inspiring Artists: Sharing their art, sharing their stories

Art is a powerful way for patients advocates to share their stories and make their voices heard. Celebrity artists who step forward can reach a massive audience, but all voices, and all artistic expressions, matter.  Here are just a few examples:

 

Rare Artist is an online gallery dedicated to artists affected by a rare disease: www.rareartist.org

 

Song of Hope

Composed by Peter Meechan, Song of Hope is dedicated to trumpeter Ryan Anthony and his charity, Cancer Blows⁠—a foundation set up to raise awareness and money to further the research into multiple myeloma, which Anthony has.

 

Alzheimer’s Stories

This choral piece is based on stories of those with Alzheimer’s.

 

Lady GaGa and fibromyalgia

Musician and actress Lady GaGa recently went public with her struggle with fibromyalgia. Read this NBC News coverage, or watch these excerpts from a reccent documentary:

 

Avril Levigne and Lyme disease

Musician Avril Lavigne discussed her battle with Lyme disease, it's affect on her career, and its influence on her single, “Head Above Water”