In this "Community Spotlight Edition" of "Ask the Expert," Landy Thomas of SRNA talked with Marie Abrego and Dr. Roopa Ramamoorthi about visual impairment and their collaborative book of poetry, Rare Visions, published through the Ipsen Foundation. Dr. Ramamoorthi shared her inspiration for the collection of work from individuals who have been diagnosed with rare diseases [00:02:35]. Landy read select poems from Rare Visions, and the guests offered personal insights into their adapted lives and the significance of accessible technology [00:08:57]. Finally, they discussed the importance of raising awareness about rare diseases and accessibility issues through poetry [00:31:05].
Roopa Ramamoorthi, PhD is a scientist in the field of global health and published poet as well as director for the Catalyst program and InVent Fund at UC San Francisco. Her poetry essays and short stories have appeared in over 80 publication including various anthologies and "Perspectives" on NPR. Most recently, she conducted poetry workshops with people living with rare diseases. She feels honored to have now worked with those with rare eye diseases and to help send their voices out into the world. The poetry collections Rare Sounds and Rare Visions were published by the Ipsen Foundation:
https://www.fondation-ipsen.org/?s=Roopa+Ramamoorthi
Marie Abrego is proud to be the Welcome Manager for The Sumaira Foundation. Diagnosed with NMO in 2007 when she was only 14 years old, she shared the story of her diagnosis a few years ago, but as she learned, life doesn’t stop with NMO. In 2019, she joined The Sumaira Foundation as one of the first patient TSF Ambassadors representing the state of New Mexico.
00:00 Introduction
01:18 Meet Marie Abrego and Dr. Roopa Ramamoorthi
01:58 The Power of Poetry in Rare Disease Awareness
04:37 Challenges of Living with Vision Impairment
09:12 Adapting to Vision Loss: Tools and Techniques
14:14 Expressing Through Poetry: Marie Abrego's Work
21:21 Makeup and Femininity
22:33 The Emotional Impact of Blindness
25:20 Reading and Discussing Poems by Landy Thomas
33:29 Leah Campbell's Powerful Poems
38:21 Final Thoughts