The CFRI CF Community Voices Podcast

Understanding Inflammation, Hormones and Stress with Ashe Milkovic

This episode features Ashe Milkovic, NTP, IC-FHS, FBCS, Founder amd CEO of The International Association for Functional Hormone Health. Learn about the primary roles of hormones in the body, and how stress and inflammation interfere with hormone health. Ashe also shares ways to lower stress hormones to increase better hormonal balance, decrease inflammation, and nourish healthier stress responses.

If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.

CFRI-Funded Research: Advancing the Search for a Cure

Since CFRI awarded its first CF research grant to the legendary Paul Quinton, PhD, in 1977, CFRI has provided over $10 million to support innovative research at medical and academic institutions across the United States. In this film, current and recently funded CF researchers share about their work, the importance of continued focus on CF research, and the role CFRI has played in furthering their scientific projects and the search for a CF cure.

If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.

Panel Discussion: The Impact of CF on the Siblings (Video)

CFRI's Virtual 35th National CF Education Conference featured a panel discussion about the impact of CF on the siblings. Three siblings of adults with CF – Marina Gonzales, Damian Rice, and Suraj Patel – opened up about how their siblings’ disease has shaped and influenced their own lives. The panel was moderated by Deborah Menet, LCSW, a CF social worker at the Stanford CF Center.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

CF-Related Bone Disease: Current Evidence and Future Directions - Melissa Putman, MD, MMSc

Dr. Melissa Putman, Assistant Professor at Harvard Medical School and an endocrinologist at Boston Children’s Hospital (BCH) and Massachusetts General Hospital (MGH), gives a comprehensive overview on the connection between cystic fibrosis and bone disease, and the various risk factors contributing to compromised bone health. She also discusses prevention and treatment options, as well as the impact of CFTR modulators on bone health. This presentation was part of CFRI's Virtual 35th National CF Education Conference.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Advocacy in the CF Realm - Jacob Fraker, MSW, Diane Shader Smith

In the first half of this two-part session, Jacob Fraker, MSW, an adult with CF who serves in multiple roles in the state Capitol, including as a legislative aide to a California State Senator, provided an overview of the many ways in which members of our CF community can participate in advocacy efforts individually, through CFRI, and within coalitions. Part two of the session featured Diane Shader Smith, who took on the role of advocate after her daughter Mallory lost her battle with antibiotic-resistant pathogens. Diane talked about the need for new antibiotics, antifungals, and phage therapy, the PASTEUR Act, and the groups and efforts that have mobilized to respond to this health crisis. This presentation was part of CFRI's Virtual 35th National CF Education Conference.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Panel Discussion: The Impact of CF on the Siblings (Audio)

CFRI's Virtual 35th National CF Education Conference featured a panel discussion about the impact of CF on the siblings. Three siblings of adults with CF – Marina Gonzales, Damian Rice, and Suraj Patel – opened up about how their siblings’ disease has shaped and influenced their own lives. The panel was moderated by Deborah Menet, LCSW, a CF social worker at the Stanford CF Center.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

CF-Related Bone Disease - Melissa Putman, MD, MMSc (Audio)

Dr. Melissa Putman, Assistant Professor at Harvard Medical School and an endocrinologist at Boston Children’s Hospital (BCH) and Massachusetts General Hospital (MGH), gives a comprehensive overview on the connection between cystic fibrosis and bone disease, and the various risk factors contributing to compromised bone health. She also discusses prevention and treatment options, as well as the impact of CFTR modulators on bone health. This presentation was part of CFRI's Virtual 35th National CF Education Conference.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Advocacy in the CF Realm - Jacob Fraker, MSW, Diane Shader Smith (Audio)

In the first half of this two-part session, Jacob Fraker, MSW, an adult with CF who serves in multiple roles in the state Capitol, including as a legislative aide to a California State Senator, provided an overview of the many ways in which members of our CF community can participate in advocacy efforts individually, through CFRI, and within coalitions. Part two of the session featured Diane Shader Smith, who took on the role of advocate after her daughter Mallory lost her battle with antibiotic-resistant pathogens. Diane talked about the need for new antibiotics, antifungals, and phage therapy, the PASTEUR Act, and the groups and efforts that have mobilized to respond to this health crisis. This presentation was part of CFRI's Virtual 35th National CF Education Conference.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

CF in Pakistan - A Personal Story

Raheema Arbi is a young woman living with cystic fibrosis. In her native Pakistan, those living with CF have little access to therapies and care. In this podcast, Raheema shares her personal story of resilience, and her hope that all those living with CF - regardless of country - will receive an accurate diagnosis and optimal medical care, She hopes you will watch and share her story to raise global CF awareness.

If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.

The Challenges of Aging for People with CF - Richard Simon, MD

Dr. Richard Simon, Professor Emeritus at the Division of Pulmonary and Critical Care Medicine at the University of Michigan, gives a comprehensive overview of the health challenges faced by an aging CF population. In addition to general aging symptoms such as decreasing mobility, reduced strength, and memory loss, there are CF-specific issues such as CF-related diabetes, CF-related bone disease, and gastrointestinal cancers. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.