The CFRI CF Community Voices Podcast

Exploring Nucleic Acid Based Approaches to Treat People with CF - Jennifer Taylor-Cousar, MD, MSCS (audio)

Dr. Jennifer Taylor-Cousar, a tenured professor of adult and pediatric pulmonary medicine and co-director of the Adult CF Program at National Jewish Health, gives a comprehensive overview of nucleic acid-based therapies (NABT), which aim to deliver the correct instructions to the cell for making a functional CFTR protein. She reviews lessons learned from historical NABT efforts, pre-clinical data supporting renewed clinical investigative efforts, and ongoing clinical trial designs and updates. 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.

Making Sense of GHPP and CCS - What Are the Benefits? - Lynne Kinst (Video)

California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) which helps adult beneficiaries with their health care costs, and California Children's Services, which helps those under 21. Learn about eligibility, the application process and enrollee benefits.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Making Sense of GHPP and CCS - What Are the Benefits? - Lynne Kinst (Audio)

California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) which helps adult beneficiaries with their health care costs, and California Children's Services, which helps those under 21. Learn about eligibility, the application process and enrollee benefits.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

All That Really Matters: A Conversation & Book Reading with Dr. David Weill (Video)

In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from his novel, Dr. Weill discusses real life issues that are central themes of the novel, including unethical hospital practices that determine patients’ placement on the transplant wait list, and the need for more transparency in the allocation system for transplanted organs.

More information about Dr. Weill and his books may be found at www.davidweill.com.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

All That Really Matters: A Conversation & Book Reading with Dr. David Weill (Audio)

In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from his novel, Dr. Weill discusses real life issues that are central themes of the novel, including unethical hospital practices that determine patients’ placement on the transplant wait list, and the need for more transparency in the allocation system for transplanted organs.

More information about Dr. Weill and his books may be found at www.davidweill.com.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Demystifying the Colonoscopy Process - Jeffrey King, MD (Video)

Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped that more members of the CF community will schedule this potentially life-saving screening.

CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Demystifying the Colonoscopy Process - Jeffrey King, MD (Audio)

Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped that more members of the CF community will schedule this potentially life-saving screening.

CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Stretch Your Budget: What To Make With What You Have - Maggie Williamson (Video)

In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile meals for less. Maggie also shares ways to use food before it ends up in the trash so as to reduce waste and stretch your cash. Following Maggie's tips, cooking and cleanup can be less expensive, while saving time and precious energy.

‘Batch Cooking Bolognese’ recipe available for you here: http://www.cfri.org/wp-content/uploads/2024/07/Bolognese-Recipe_MW.pdf

Recommended Items to have on hand:

CANNED/DRIED: tomatoes, beans, rice, fish (tuna, salmon, sardines, crab).

SPICES: garlic, onion, Italian seasoning, cumin, oregano, chili flakes, fennel seeds.

SAUCE: soy (or GF tamari), hot sauce, vinegars (red or white wine, apple cider, olive oil, or vegetable or coconut.

FROZEN: vegetables, fruits.

STOCK: chicken or Better Than Bouillon.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

#Bolognese #Recipe #Cooking #CookingonaBudget

Stretch Your Budget: What To Make With What You Have - Maggie Williamson (Audio)

In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile meals for less. Maggie also shares ways to use food before it ends up in the trash so as to reduce waste and stretch your cash. Following Maggie's tips, cooking and cleanup can be less expensive, while saving time and precious energy.

‘Batch Cooking Bolognese’ recipe available for you here: http://www.cfri.org/wp-content/uploads/2024/07/Bolognese-Recipe_MW.pdf

Recommended Items to have on hand:

CANNED/DRIED: tomatoes, beans, rice, fish (tuna, salmon, sardines, crab).

SPICES: garlic, onion, Italian seasoning, cumin, oregano, chili flakes, fennel seeds.

SAUCE: soy (or GF tamari), hot sauce, vinegars (red or white wine, apple cider, olive oil, or vegetable or coconut.

FROZEN: vegetables, fruits.

STOCK: chicken or Better Than Bouillon.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

#Bolognese #Recipe #Cooking #CookingonaBudget

How To Plan For the Future On Limited Resources - Arek Puzia, MBA (Video)

In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some tips on lowering the cost of living with some cost savings hacks, and where to find resources that may be able to help with the high cost of living with cystic fibrosis.

CFRI has an extensive resource list available on its website. Go to https://www.cfri.org/education-support/cf-patient-assistance-resources/ to review and/or download a copy.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.