Month: April 2026

In this heartfelt episode of Remarkable World Commentary, Donna J. Jodhan sits down with Pam Cusick, Senior Vice President of Rare Patient Voice, to explore how patient-centered healthcare research is reshaping the relationship between people living with medical conditions and the companies developing treatments, products, and services for them. Pam traces her 30-year path in the field back to her first job working on FDA blood-donor screening research, then walks through how Rare Patient Voice has grown into a global community of more than 200,000 patients and caregivers spanning 1,500+ conditions across nine countries, compensating participants $120 per hour and paying out more than $8 million directly to patients and caregivers since the company was founded in 2013. She details the straightforward sign-up process, the deeply therapeutic value participants describe in finally being heard without judgment or fear of burdening loved ones, and what Rare Patient Voice’s recent acquisition by Konovo, a tech-first healthcare intelligence firm backed by Frazier Healthcare Partners, means for expanding those opportunities even further.

In this wide-ranging episode of Remarkable World Commentary, Donna J. Jodhan sits down with Kim Charlson, Director of the Perkins Braille and Talking Book Library, to trace Kim’s 41-year journey at Perkins, from losing her vision at age 11, to becoming one of the first totally blind people in the United States to earn a master’s degree in library science, to leading one of the country’s most innovative accessible library programs for the past 24 years. Kim describes how the library has grown far beyond lending books, now offering downloadable audiobooks, loanable Braille e-readers, an audio-described film collection, a professional recording studio, and an assistive-technology “library of things”, a program that helped drive over 900,000 items shipped in the past year alone. She also reflects on mentoring blind professionals into library leadership, noting that five blind directors now lead libraries across the U.S., a barrier she has helped dismantle by example.

In this wide-ranging episode of Remarkable World Commentary, Donna J. Jodhan sits down with longtime advocate, author, and broadcaster Bob Branco for a wide-ranging conversation about growing up blind, building a life of creative independence, and choosing one’s relationship with technology on one’s own terms. Bob traces his path from a sight-saving class in New Bedford, Massachusetts to eight years at the Perkins School for the Blind, where he picked up the orientation and mobility skills, Braille fluency, and quiet confidence that still anchor his daily life, he notes he has been using the same Perkins Brailler for sixty-one years. He talks about what drove him to write My Home Away from Home and As I See It From a Blind Man’s Perspective, the nearly twenty-year run of his Consumer Vision magazine, his columns for Matilda Ziegler and the American Council of the Blind, and the hundreds of episodes he has produced of In Perspective and Sports Roundtable since 2017.

In this episode of Remarkable World Commentary Donna opens with her favorite quote, “Speak in such a way that others love to listen to you, and listen in such a way that others love to speak to you”, followed by her monthly word game pairing respect vs. disrespect (respect is earned, never given) and courteous vs. condescend (the fine line between thoughtful responses and careless, hurtful ones). She also flags a technical note: her Gmail is temporarily broken, so listeners should write to her at donnajodhan@sterlingcreations.ca.

In this episode of Remarkable World Commentary Donna names the often-invisible price advocates with disabilities pay to show up for their communities. She walks through four recurring drains on her livelihood: volunteering (giving away unpaid slices of her expertise while paid staff manage the volunteers), advisory committees (companies harvest lived experience from disabled members and give little back), free research participation (universities, colleges, and agencies expecting her knowledge for free, or offering Tim Hortons/Starbucks coupons instead of real compensation, sometimes guilt-tripping her that she “owes it to the community”), and free evaluation of draft proposals (including hours spent reviewing Canadian government Accessible Canada Act materials with little recognition or pay). Her call is blunt: stop asking for free labor and pay disabled advocates for their knowledge, skills, and experience.