Rare Sounds E-Book

Roopa Ramamoorthi

• Herausgeber: Fondation Ipsen BookLab
• Kategorie: Poesie und Drama
• Sprache: Englisch

Seitenzahl: 25

Veröffentlichungsjahr: 2023

Beschreibung

The voices of millions of people, many children, living with rare diseases are often unheard. People living with rare diseases are silenced through stigma and discrimination. Poetry gives its writers power through self-expression. In this magnificent project, Dr Ramamoorthi teaches people who would otherwise be silenced to express themselves through poetry. By teaching poetry as a method of self-expression, the teacher gives voices to the silent. Not only are the poems eye-opening and heartrending, but this book includes a teaching guide so that the method is scalable. I wish for a world where people are valued for who they are and not for what they appear; this beautiful collection of poetry takes us one step closer.James A. Levine, MD, PhD, Professor
President, Fondation Ipsen


ABOUT THE AUTHOR Roopa Ramamoorthi, is a scientist and published poet as well as Director for the Catalyst and InVent Fund at UCSF. Her essays, poetry and short stories have appeared in over 80 publications including various anthologies, perspectives on NPR and she has been featured at former San Francisco poet laureate Kim Shuck’s poetry events. She feels honored to have conducted the poetry workshops with people living with rare diseases and to help send their voices out into the world.

Leseprobe

Couverture

Front cover: artwork by Janelle La Chaux

Titre

The voices of millions of people, many children, living with rare diseases are often unheard. People living with rare di-seases are silenced through stigma and discrimination. Poetry gives its writers power through self-expression. In this ma-gnificent project, Dr Ramamoorthi teaches people who would otherwise be silenced to express themselves through poetry. By teaching poetry as a method of self-expression, the teacher gives voices to the silent. Not only are the poems eye-opening and heartrending, but this book includes a teaching guide so that the method is scalable. I wish for a world where people are valued for who they are and not for what they appear; this beautiful collection of poetry takes us one step closer.

James A. Levine, MD, PhD, ProfessorPresident, Fondation Ipsen

This collection of poetry was written by people impacted by rare diseases and is a testament to their resilience. The collection also serves as a work of support and inspiration for the rare disease community. Poetry captures the deepest feelings: despair and hope, uncertainty and understanding, as well as loss and love. The healing words of poetry can have a positive impact on both the reader and the poet.  These poems serve as a vision for a future with better diagnostics, better treatments and even cures. On behalf of the organizers of the UCSF Rare Disease Symposium, I want to thank all of the contributors to this thoughtful and heart-felt collection. Additional thanks to the Foundation Ipsen for their generous support.

Charles Hart, PhD,Executive Director, Catalyst Program, UCSF

Contents

Introduction 10

Rare Disease Poetry Workshops Lesson Plan 14

Poems collection 18

Poemby Michael D19

Aplastic Anemiaby Michael D20

Who Am I?by Sparsh Shah21

Doors and Windowsby Sparsh Shah 23

Allodyniaby Heather Dever 26

Moonlightby Heather Dever 27

The Girl Who Cried Wolfby Heather Dever30

Fire Withinby Janelle La Chaux31

Poemby Janelle La Chaux33

Poem Iby Gael Muteba 34

Poem II by Gael Muteba 35

I already Knowby Tamara Hattis36

My Secretby Tamara Hattis37

Graduate School for Communicative Disordersby Tamara Hattis38

Brain Stormby Josiah Titan40

Hope Is My Cureby Josiah Titan41

Corrected Visionby Van Duesterberg42

From One to Manyby Van Duesterberg43

Prose Poemby Brittany Postle45

Prose Poem IIby Brittany Postle46

From the Outsideby Michael Rabow, MD 47

Not Every Problemby Michael Rabow, MD 48

Poets’ Biosketches 50

Poets’ Index 55

Introduction

Introduction

It was my pleasure and honor to work with these remarkable individuals who have demonstrated their amazing strength, resilience and grace in dealing with their rare diseases and how they are navigating life. When I embarked on this project, initially to get poems from people at Benioff Children’s Hospital in Oakland so their voices could be heard during the lunch