The CFRI CF Community Voices podcast

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Managing CF and Incontinence (Video) 29:07

7 weeks 전29:07

나중에 재생

리스트

29:07

Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available. Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F , and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.…

1
Managing CF and Incontinence (Audio) 29:07

7 weeks 전29:07

나중에 재생

리스트

29:07

Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available. Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F , and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.…

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Unique Transplant Journeys: Stories of Strength and Resilience (Video) 34:24

13 weeks 전34:24

나중에 재생

리스트

34:24

April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do... Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.…

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Unique Transplant Journeys: Stories of Strength and Resilience (Audio) 34:24

13 weeks 전34:24

나중에 재생

리스트

34:24

April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do... Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.…

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The Impacts of CF on Sinonasal Health & Olfactory Function — Jessa E. Miller, MD (Video) 35:08

16 weeks 전35:08

나중에 재생

리스트

35:08

In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do... Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.…

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The Impacts of CF on Sinonasal Health & Olfactory Function — Jessa E. Miller, MD (audio) 35:08

16 weeks 전35:08

나중에 재생

리스트

35:08

In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do... Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.…

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CF and Cancer - Chelsea Lau, MD (Video) 52:08

18 weeks 전52:08

나중에 재생

리스트

52:08

In this podcast, Dr. Chelsea Lau, a Fellow Physician in Hematology and Oncology at Northwestern Memorial Hospital, explores the link between cystic fibrosis (CF) and various types of cancer. Dr. Lau provides insights into how cancer develops in the general population and highlights the unique cancer risks for people with CF as well as CF carriers. She discusses the connection between CF and cancers such as intestinal, pancreatic, liver, cervical, and lung cancers, highlighting the latest data on these relationships. The episode concludes by covering screening recommendations and key considerations for managing cancer in the CF community. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do... Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F , and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.…

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CF and Cancer - Chelsea Lau, MD (Audio) 52:08

18 weeks 전52:08

나중에 재생

리스트

52:08

In this podcast, Dr. Chelsea Lau, a Fellow Physician in Hematology and Oncology at Northwestern Memorial Hospital, explores the link between cystic fibrosis (CF) and various types of cancer. Dr. Lau provides insights into how cancer develops in the general population and highlights the unique cancer risks for people with CF as well as CF carriers. She discusses the connection between CF and cancers such as intestinal, pancreatic, liver, cervical, and lung cancers, highlighting the latest data on these relationships. The episode concludes by covering screening recommendations and key considerations for managing cancer in the CF community. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do... Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F , and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.…

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CFRI-Funded Researchers Advance Science and Hope (Video) 3:50

24 weeks 전3:50

나중에 재생

리스트

3:50

In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F , and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris.…

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CFRI-Funded Researchers Advance Science and Hope (Audio) 3:50

24 weeks 전3:50

나중에 재생

리스트

3:50

In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F , and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris.…

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Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Video) 6:38

27 weeks 전6:38

나중에 재생

리스트

6:38

In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F , and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris.…

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Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Audio) 7:03

27 weeks 전7:03

나중에 재생

리스트

7:03

In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F , and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris.…

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Matt De Fina's CF Journey: From Double Lung Transplant to Napa Valley Winemaker (Video) 27:55

31 weeks 전27:55

나중에 재생

리스트

27:55

Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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Matt De Fina's CF Journey: From Double Lung Transplant to Napa Valley Winemaker (Audio) 27:55

31 weeks 전27:55

나중에 재생

리스트

27:55

Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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Pancreatic Disease and CFRT Modulators: Dr. Katie Larson Ode (Video) 42:19

31 weeks 전42:19

나중에 재생

리스트

42:19

In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Panel: Advocacy, Access and Health Equity in Cystic Fibrosis (Audio) 51:35

41 weeks 전51:35

나중에 재생

리스트

51:35

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.…

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The CFRI CF Community Voices Podcast

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Living Proof: Nearly Seventy Years with Cystic Fibrosis - Luanne McKinnon, PhD (Video) 44:05

41 weeks 전44:05

나중에 재생

리스트

44:05

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.…

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The CFRI CF Community Voices Podcast

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Living Proof: Nearly Seventy Years with Cystic Fibrosis - Luanne McKinnon, PhD (Audio) 44:05

41 weeks 전44:05

나중에 재생

리스트

44:05

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.…

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The CFRI CF Community Voices Podcast

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Sexual and Reproductive Health in CF - Natalie E. West, MD, MPH (Video) 37:05

42 weeks 전37:05

나중에 재생

리스트

37:05

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.…

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The CFRI CF Community Voices Podcast

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Sexual and Reproductive Health in CF - Natalie E. West, MD, MPH (Audio) 37:05

42 weeks 전37:05

나중에 재생

리스트

37:05

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.…

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The CFRI CF Community Voices Podcast

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The Power of Passion - Nicholas Kelly, MS, RD, LD (Video) 26:04

42 weeks 전26:04

나중에 재생

리스트

26:04

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.…

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The CFRI CF Community Voices Podcast

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The Power of Passion - Nicholas Kelly, MS, RD, LD (Audio) 26:04

42 weeks 전26:04

나중에 재생

리스트

26:04

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.…

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The CFRI CF Community Voices Podcast

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Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Video) 44:50

43 weeks 전44:50

나중에 재생

리스트

44:50

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.…

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The CFRI CF Community Voices Podcast

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Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Audio) 44:50

43 weeks 전44:50

나중에 재생

리스트

44:50

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.…

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The CFRI CF Community Voices Podcast

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Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Video) 49:46

43 weeks 전49:46

나중에 재생

리스트

49:46

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.…

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The CFRI CF Community Voices Podcast

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Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Audio) 49:47

43 weeks 전49:47

나중에 재생

리스트

49:47

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.…

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The CFRI CF Community Voices Podcast

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Phage Therapy for CF-Associated Infections - Benjamin Chan, PhD (Video) 31:08

44 weeks 전31:08

나중에 재생

리스트

31:08

Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. 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.…

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The CFRI CF Community Voices Podcast

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Phage Therapy for CF-Associated Infections - Benjamin Chan, PhD (Audio) 31:08

44 weeks 전31:08

나중에 재생

리스트

31:08

Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. 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.…

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The CFRI CF Community Voices Podcast

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Panel: Coping with Cancer and CF (Video) 40:12

44 weeks 전40:12

나중에 재생

리스트

40:12

In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. 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.…

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The CFRI CF Community Voices Podcast

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Panel: Coping with Cancer and CF (Audio) 40:12

44 weeks 전40:12

나중에 재생

리스트

40:12

In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. 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.…

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The CFRI CF Community Voices Podcast

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Pancreatic Disease and CFRT Modulators: Dr. Katie Larson Ode (Audio) 42:19

31 weeks 전42:19

나중에 재생

리스트

42:19

In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Advancing Advocacy and Awareness - CFRI Advocacy Film 2024 2:27

32 weeks 전2:27

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2:27

In less than three minutes, viewers will learn about cystic fibrosis (CF), the need for continued research to find a cure, the diversity of our community, and the many programs and services CFRI offers to the CF community. Please share with your networks to expand the impact of this film. Awareness is key to connect our community members to needed resources, while inspiring others to advocate for increased research funding and access to therapies.…

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The CFRI CF Community Voices Podcast

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Updates in Constipation Management for CF: Lauren Kormelink, PharmD, BCACP (Video) 48:13

32 weeks 전48:13

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48:13

In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Updates in Constipation Management for CF: Lauren Kormelink, PharmD, BCACP (Audio) 48:13

32 weeks 전48:13

나중에 재생

리스트

48:13

In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Renal Challenges in Aging with Cystic Fibrosis: Alexandra “Xan” C.H. Nowakowski, PhD, MPH (Video) 57:17

33 weeks 전57:17

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57:17

In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF).Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Renal Challenges in Aging with Cystic Fibrosis: Alexandra “Xan” C.H. Nowakowski, PhD, MPH (Audio) 57:17

33 weeks 전57:17

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57:17

In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF). Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Understanding CF & Men’s Sexual and Reproductive Health - Georgia Brown and Reuben Samuels (Video) 25:52

34 weeks 전25:52

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25:52

Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Understanding CF & Men’s Sexual and Reproductive Health - Georgia Brown and Reuben Samuels (Audio) 25:52

34 weeks 전25:52

나중에 재생

리스트

25:52

Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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10 Tips for Traveling with Disease & Illness by Full Time Traveler with CF, Caleigh Haber-Takayama (Video) 31:09

35 weeks 전31:09

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31:09

Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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10 Tips for Traveling with Disease & Illness by Full Time Traveler with CF, Caleigh Haber-Takayama (Audio) 31:09

35 weeks 전31:09

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리스트

31:09

Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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CF and Cardiovascular Disease: Time to Listen to Your Heart! Alex Despotes, MD (Video) 57:47

36 weeks 전57:47

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57:47

This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and prevention. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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CF and Cardiovascular Disease: Time to Listen to Your Heart! Alex Despotes, MD (Audio) 57:47

36 weeks 전57:47

나중에 재생

리스트

57:47

This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and prevention. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Therapeutic Strategies to Address Medical Trauma in the CF Community - Kate Yablonsky, LCSW (Video) 1:04:14

40 weeks 전1:04:14

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1:04:14

Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Therapeutic Strategies to Address Medical Trauma in the CF Community - Kate Yablonsky, LCSW (Audio) 1:04:14

40 weeks 전1:04:14

나중에 재생

리스트

1:04:14

Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences. CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.…

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The CFRI CF Community Voices Podcast

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Panel: Advocacy, Access and Health Equity in Cystic Fibrosis (Video) 51:35

41 weeks 전51:35

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51:35

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.…

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