When a rare disease strikes, we might be to think only of the small populations of patients who are impacted by any single rare condition as stories too specific to be told. Taken in aggregate, rare disease has a sobering impact on the lived experiences of so many patients but also their families and care givers. There is a chorus of story tellers in rare disease who need to be heard, elevated and advocated for.

In this episode of the Story Conversations podcast we talk with Pam Cusick, SVP of Strategy, Client Solutions and Patient Advocacy at Rare Patient Voice. RPV connects patients and family caregivers globally with all types of engagement opportunities, in market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials.

Pam shares poignant stories about passionate care givers who turn the tragedies of rare disease that impact their families into life defining initiatives to make a difference in the broader world. These stories reflect the community of patients, families and the thousands of advocacy and support groups RPV helps through their referral programs. Our conversation with Pam reveals how providing opportunities for patient and care giver stories to be heard drives action to tackle the economics and therapeutic implications of rare disease and provides a window into the realities of living with (not just dying from) rare conditions.

Details on the work of Rare Patient Voice can be found here: http://www.rarepatientvoice.com

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What happens in academic research when the subjects who are being researched are actually empowered to be active participants in the shape of the research process itself? Can the resulting story data yield insights with greater potential to stimulate discovery and change?

Our guest this episode is Judy Pryor-Ramirez, Clinical Associate Professor of Public Service and Faculty Director, Executive MPA Program at the Robert F. Wagner Graduate School of Public Service at New York University.

She shares with us her journey to developing academic research tools inspired by civil rights era theatrical techniques called “story circles”. These engagement methods were first established to spark dialogue around social injustice, voter disenfranchisement and segregation. She shares how this applying the “story circle” interview process can help academic social scientists reach deeper levels of understanding the dynamics of their research subjects’ lived experiences, especially in indigenous, Black and Latino communities.

In our conversation, Judy references a book to which she contributed, on the origin and extension of the “story circles” interview process method and case studies of its use in social science research. She provides our listeners with the following information about its availability.

Book title: Anti-colonial research praxis: Methods for knowledge justice

Edited by Caroline Lenette

Book website: https://manchesteruniversitypress.co.uk/9781526177001/

Discount code for 30% off on the publisher’s website: EVENT30

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Everywhere in the world non-profit organizations are challenged to pursue their mission, none more so than arts and cultural organizations like museums, ballet and opera companies, and theaters. Present circumstances with arts funding being cut exacerbates perennial struggles. Arts based non-profit organizations have always sought ways to grow their audiences efficiently, sell more tickets and build sustainable sources of funding. Now, this quest is mission critical.

Our guest this episode is Eric Nelson, Vice President, Global Partnerships at TRG Arts, an international change agency committed to building thriving arts and cultural organizations. Experts in the arts sector for over 25 years, TRG Arts has earned a reputation by successfully shaping for-profit and non-profit business models to focus on consumer relationships, financial stability, organizational frameworks, and people-centric teams.

In this episode, Eric talks about the need for non-profit arts and cultural organizations to be better storytellers as well as dispelling myths about growing, surviving and thriving in tumultuous times.

To learn more about TRG Arts: http://www.trgarts.com/

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Our guest this episode is Giovanni Boivin, the proprietor of The BookLoft, a 50-year-old independent bookstore in Great Barrington Massachusetts in the US. A “Storyteller turned Storyseller”, Gio (as he is known to staff and customers) turned a grade school love of story to a career that has manifested in creative writing and then relating the stories behind a tourist destination as a tour guide, at an historic house in the Berkshire region of Western Massachusetts he calls home. Since 2022 Gio has been the owner of The Bookloft, where he started as a clerk and wore many hats for years before becoming its steward and proprietor.

The Bookloft serves locals and visitors as an alternative to the big box retailers who have rendered many indie bookstores extinct. But fear not if Western Mass is not on your itinerary anytime soon. Gio presides over a healthy online business as well, that will locate and ship titles domestically for your reading pleasure and gifting needs. https://www.thebookloft.com/

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Our guest this episode is Malu Halasa, a prolific and passionate observer of the Middle East through the lens of art and culture. Our conversation explores how she provides readers with a unique window into the changing mores of the region, having written and edited over 8 anthologies, and several novels and short stories of her own.

Born in Oklahoma, to Jordanian and Filipino parents, raised in Ohio, a graduate of Barnard College, Columbia University, Malu now lives in London, where she is currently a Literary Editor at The Markaz Review.

As a journalist, Malu’s contributions include music journalism for Rolling Stone, and writing for Huffington Post, and The Guardian.

Anthologies she has edited include:

· “Syria Speaks: Art and Culture from the Frontline”,

· “Culture in Defiance: Continuing Traditions of Satire, Art and the Struggle for Freedom in Syria”,

· “Transit Tehran: Young Iran and Its Inspirations”

· “The Secret Life of Syrian Lingerie: Intimacy and Design”,

· “Woman Life Freedom: Voices and Art from the Women’s Protests in Iran”,

· And a new book coming out in January called “Sumud: A New Palestinian Reader”

Her debut novel “Mother of all Pigs” is an epic Jordanian family saga chronicling the comedy and pathos of the patriarchy in decline.

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What could be more theatrical than stories told in a courtroom? Especially those told to represent individuals who cannot afford adequate defense when accused of a crime?

In this episode we chat with Matt Cleaver, Staff Attorney with Brooklyn Defender Services, a passionate public defender and a human rights activist. Trained in theater, experienced in arts administration and theater management, Matt pivoted to a career in law, to make a difference in lives of those disadvantaged in society. He brings a unique perspective to his role, representing and advocating for clients whose stories are often silenced by the nature of legal system. In our chat Matt shares anecdotes of using story to engage prosecutorial adversaries as collaborators, the need for specificity to amplify the stories of his clients, and the significance of language we use that can subtly impact the outcome of any defense.

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In this episode we couldn’t be prouder to chat with jazz vocalist Tierney Sutton.

A nine-time Grammy nominated artist, with an international performing career, Tierney is known for unique and inventive arrangements of jazz standards and other musical genres, a 20-year relationship with her band, and deft retellings of songs’ stories that we thought we knew. She is now performing own compositions in one of her most recent collaborations (or “consultations” as she explains on the podcast) with the San Gabriel 7 in the album and music video Good People.

You can learn about all things Tierney, find a calendar of where she is performing, and links to listen to recordings her music and her on YouTube pages listed on her site: https://tierneysutton.com/

If you don’t know her work there are so many stand outs we would recommend listening to, including albums featuring songs from artists as diverse as Joni Mitchell and Sting, and songs we know from movies. (She has great stories about the band working with Clint Eastwood to creating the soundtrack to the movie “Sully”.)

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In Episode 3 of Season 3 we're thrilled to speak with author and marketing guru Mark Earls. Mark make the brain stuff simple to help brands and businesses understand how people behave.

Follow Mark on LinkedIn https://www.linkedin.com/in/mark-earls-a393982/ or visit his website https://herdhq.com/ for more.

Story Conversations is produced by Iambic Creative and Griffin + Skeggs Collaborative.

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