The CFRI CF Community Voices Podcast

CF Advocacy: The Personal & The Political with Jacob Fraker

Jacob Fraker, CFRI's Legislative Analyst who lives with CF, discusses the development of his political awareness and advocacy efforts on behalf of the CF community, rare disease community and LGBTQ community.

My Personal CF Journey - From Infancy to Advocacy

Jacob Fraker shares his life journey with CF. Currently working on his social work degree, Jacob is serving as CFRI's legislative analyst. Jacob shares the factors that motivated him to focus on his health and pursue his goals of service and advocacy for those with CF, the LGBTQ community, and others who need a voice.

Sponsored by Vertex Pharmaceuticals, Chiesi USA, Gilead Sciences, Proteostasis Therapeutics, and Genentech.

My Personal CF Journey - From Infancy to Advocacy

Jacob Fraker shares his life journey with CF. Currently working on his social work degree, Jacob is serving as CFRI's legislative analyst. Jacob shares the factors that motivated him to focus on his health and pursue his goals of service and advocacy for those with CF, the LGBTQ community, and others who need a voice.

Sponsored by Vertex Pharmaceuticals, Chiesi USA, Gilead Sciences, Proteostasis Therapeutics, and Genentech.

Gastrostomy Tubes in CF: The What, When, Why, and How? Julie Matel, MS, RD & Zachary Sellers, MD

Living and Thriving with a G-Tube - Darcy Ogle

Darcy Ogle's daughter has cystic fibrosis and has had a g-tube since she was an infant, In this podcast, Darcy describes her experience through the years, and the benefits she has seen for her daughter. Darcy provides encouragement, as well as helpful tips for others.

Gastrostomy Tubes in CF: The What, When, Why, and How? Julie Matel, MS, RD & Zachary Sellers, MD - Audio

Living and Thriving with a G-Tube - Darcy Ogle - Audio

Darcy Ogle's daughter has cystic fibrosis and has had a g-tube since she was an infant, In this podcast, Darcy describes her experience through the years, and the benefits she has seen for her daughter. Darcy provides encouragement, as well as helpful tips for others.

PART 2: Mind Body Therapies in Cystic Fibrosis - John Mark, MD - Audio

John Mark, MD, is a pediatric pulmonologist at Lucile Packard Children’s Hospital at Stanford, where he utilizes non-conventional approaches with individuals who have chronic illnesses such as cystic fibrosis. This presentation, given at CFRI's 30th National Cystic Fibrosis Family Education Conference, provides a comprehensive overview of adjunctive therapies that can enhance the cystic fibrosis medical regimen.

Conference sponsored by Genentech, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis.

PART 1: Mind Body Therapies in Cystic Fibrosis - John Mark, MD - Audio

John Mark, MD, is a pediatric pulmonologist at Lucile Packard Children’s Hospital at Stanford, where he utilizes non-conventional approaches with individuals who have chronic illnesses such as cystic fibrosis. This presentation, given at CFRI's 30th National Cystic Fibrosis Family Education Conference, provides a comprehensive overview of adjunctive therapies that can enhance the cystic fibrosis medical regimen.

Conference sponsored by Genentech, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis.

PART 2: Belonging and Identity: Growing Up with CF - Isa Stenzel Byrnes, LCSW, MPH Audio

Isa Stenzel Byrnes, social worker, co-author of the Power of Two, identical twin, adult with CF, double lung transplant recipient, Transplant Games medalist, and subject of a documentary film, shared her deep insights and inspiring perspectives on developing a sense of identity and belonging as a person with CF. This presentation was part of CFRI's 30th National Cystic Fibrosis Family Education Conference on July 30, 2017.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.