The CFRI CF Community Voices Podcast

Panel: Advocacy, Access and Health Equity in Cystic Fibrosis (Audio)

In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and quality of life. Moderated by Kimberly Morse, MSW, LCSW, panelists provide examples of optimal care and interactions, while stressing the importance of self-advocacy and community engagement. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Living Proof: Nearly Seventy Years with Cystic Fibrosis - Luanne McKinnon, PhD (Video)

Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also shares an excerpt from her memoir-in-progress entitled, Pneuma, Latin for soul and breath. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Living Proof: Nearly Seventy Years with Cystic Fibrosis - Luanne McKinnon, PhD (Audio)

Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also shares an excerpt from her memoir-in-progress entitled, Pneuma, Latin for soul and breath. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Sexual and Reproductive Health in CF - Natalie E. West, MD, MPH (Video)

Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility, contraception, and parenthood - that specifically affect people with CF. Her presentation highlights the need to optimize sexual and reproductive health care as the face of CF changes. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Sexual and Reproductive Health in CF - Natalie E. West, MD, MPH (Audio)

Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility, contraception, and parenthood - that specifically affect people with CF. Her presentation highlights the need to optimize sexual and reproductive health care as the face of CF changes. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

The Power of Passion - Nicholas Kelly, MS, RD, LD (Video)

Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driving the mission to make CF stand for "Cure Found." This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

The Power of Passion - Nicholas Kelly, MS, RD, LD (Audio)

Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driving the mission to make CF stand for "Cure Found." This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Video)

Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Audio)

Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Video)

Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.