The CFRI CF Community Voices Podcast

Nicholas Kelly - Rise Up For A Dream

Nicholas Kelly, dietitian, motivational speaker, author, DJ, artist, poet, dancer, advocate, and CF Warrior, shares the secrets to his freestyling "sauce.” Enjoy his inspirational freestyle artistry entitled “Rise Up For A Dream”, and learn how you can empower and express your unique voice.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible to date through grants from Chiesi USA, Genentech, and Viatris.

2022 CFRI Advocacy Film

Cystic fibrosis (CF) has been diagnosed in over 40,000 people in the United States. This brief film highlights symptoms, the diversity of our community, and the work of the Cystic Fibrosis Research Institute (CFRI) to ensure all people with cystic fibrosis have access to needed therapies.  

This film was made possible through educational grants from Vertex Pharmaceuticals, AbbVie, Gilead Sciences, Ionis Pharmaceuticals, and Genentech.

Enfrentando al Diagnostico - Alicia Maciel y Gina Serrato

Enfrentar un diagnóstico de fibrosis quística puede ser extremadamente aterrador y desafiante. En este conmovedor podcast, dos madres de niños con fibrosis quística, Alicia Maciel y Gina Serrato, hablan sobre sus experiencias cuando se enteraron de que sus hijos tenían FQ, y lo que les ha ayudado a desarrollar resiliencia y fortaleza personal a lo largo del viaje para garantizar la mejor calidad de vida de sus hijos.

Por su generoso apoyo, un agradecimiento especial a: Vertex Pharmaceuticals, Genentech, Chiesi USA, Gilead Sciences, y Viatris.

Oral Health and CF - Dr. Martina Hayes

Oral health is key to the overall health of individuals living with cystic fibrosis. In this podcast, recorded at the 2022 CF Adult Retreat, Dr. Martina Hayes, Associate Professor at the Dublin Dental University Hospital in Ireland, discusses what is known about CF and oral health; explains links between CF and enamel defects, tooth decay, gum disease, and more; and offers ways to improve oral health.

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.

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.