Life with CF

General Information

Our Lung Transplant Story – A story of the journey through lung transplantation written by a member of our Rochester/Finger Lakes CF community.

CF Discovery Series – Archive of CFRI webcasts on a wide variety of topics covering all aspects of living with CF.

First Year of Life – A series of videos produced by the Cystic Fibrosis Foundation geared for parents of newly diagnosed CF children. The series includes medical professionals, CF parents and an adult with CF.

Adult Guide to Cystic Fibrosis – The document provides 215 pages of information on 26 topics. There a two ways to obtain a copy of this document:

Information for Adults with CF – A series of articles published by CFF on a variety of topics ranging from treatment protocols to finances.

Family Planning and Parenting With CF – CFF introduces this section with: “As an adult with cystic fibrosis who is thinking about starting a family, there are many considerations related to your health, fertility, finances, and what life will be like as a parent. You can make an informed decision by learning more about the different family building options and what parenting with CF could entail.”

CF Roundtable – CF Roundtable is a web site maintained by the United States Adult Cystic Fibrosis Association, Inc (USACFA). The USACFA (an independent 501(c)(3) non-profit, tax-exempt organization) provides a source of information for CF adults regarding the basis, nature and progression of the disease, as well as the latest treatments and research to fight it.  It also offers a forum for CF adults to communicate with each other.

Cystic Fibrosis News TodayCystic Fibrosis News Today is the only digital news publication that is dedicated to covering the science, research, and clinical news as it relates to the disease — fulfilling a major unmet need in the medical/healthcare news sector.

Daily Life

CF Living  – CF Living is an organization which provides a place for community, support and information for those living with cystic fibrosis (CF). The site provides videos, webcasts, life stories and other information separated in to the following categories: newly diagnosed, kids and tweens, teens, young adults, adults, parents and legal guardians, and community resources.

Thriving with CF – A section of the Boomer Esiason Foundation site – The experience of living with cystic fibrosis is markedly different today than it was decades ago. Thanks to the discovery of the CF gene, the availability of effective drug therapies and advances in technology, the 30,000 Americans who deal with the disease day in and day out are living longer and fuller lives. In a word, they are thriving.

Wind Sprints – A section of the Boomer Esiason Foundation site – CF Wind Sprints are short-format videos offering quick tips for living with cystic fibrosis. The Wind Sprint series is hosted by BEF Volunteer Jerry Cahill and addresses a variety of topics, including traveling, nutrition, exercise and treatments.

Cystic Fibrosis Tips n’ Tricks – Another YouTube channel dedicated to life with CF. The link is to the home tab for Anne Barkley’s channel; click the “Videos” tab to find her topics as they are added.

Nutrition and Your Digestive System – CF Foundation provides a comprehensive guide to improving nutrition for people living with CF.

Chef 4 CF – CF nutrition resource. The site includes an Online Cookbook and a CF Nutrition Guide.

Own Your Feeding Tube – Gunnar Esiason has produced a number of videos to discuss his experience with the gastric feeding tube under the caption “Own Your Feeding Tube.” The offerings are:

  1. Episode 1: First day home – showing how easy it is to use a feeding tube and demonstrating the ENFit connection system
  2. Episode 2: What can I expect from my feeding tube – covering some frequently asked questions and some of the benefits of feeding tubes
  3. Episode 3: Normalcy with the feeding tube – how to maintain a physically active young adult life style

CF and sexuality – The Royal Children’s Hospital, the Centre for Adolescent Health and Roche (a healthcare company) collaborated on the brochure “What They Don’t Tell You:  A Young Person’s Guide to Sexual and Reproductive Health Issues in Cystic Fibrosis.” The link opens a PDF of the brochure which may be printed and downloaded.

Starting the Conversation About Emotional Wellness – Video from the NACFC in Phoenix of the One-on-One Live discussion on mental health between Matt James, a 35-year-old with CF, and Anna Georgiopoulos, M.D., assistant clinical professor of psychiatry at Harvard Medical School.

Education

Helping Kids with Cystic Fibrosis Succeed in School – An educational video for school personnel produced by the CF Center at Nemours Children’s Clinic. The video is just under 7 minutes and covers the common issues CF kids face at school.

Planning for College and Beyond – The 60-minute webcast addresses some of the issues young adults with CF are dealing with as they move into adulthood, such as living away from home for the first time and making educated decisions about their care at college.

CFRI Educational Materials – Two handy pamphlets published by Cystic Fibrosis Research, Inc. (CFRI) – Cystic Fibrosis in the Classroom (in English and Spanish) and Cystic Fibrosis Website Guide.

School and CF (Ireland) – This guide published by Cystic Fibrosis Ireland is designed to help parents acquaint teachers and others in the school system with the basics of CF and implications in the school environment.

Brighten the Day

Booster Jots – The BoosterJots concept is to tap into the innate wisdom in every child and empower that child to make creative choices regarding necessary medical treatments. This calls on children to be active participants in their care.

Make-A-Wish – Make-A-Wish® grants the wish of a child diagnosed with a life-threatening medical condition in the United States and its territories, on average, every 38 minutes. This link takes you to the “Refer a Child” page where an online request can be submitted.

Sunny Shore Sea Camp – Sunny Shores is offering a free opportunity to people with Cystic Fibrosis (CF) of all ages and up to 3 immediate family members to attend a Cystic Fibrosis Summer Camp at the Beautiful Disney Vero Beach Resort in Vero Beach Florida.

CF Community

CF Voice – Place for connection, inspiration, and community sponsored by Novartis

Club CF – The Boomer Esiason Foundation’s Club CF is an online “club” for individuals with CF of various ages who are living, breathing and succeeding, and for caregivers who are the true warriors in their support and fight against CF. CLUB CF features individuals with CF who are an inspiration to the CF community.

Cystic Life – Community coming together.

CF Roundtable –  Info source run by 12 volunteer Directors who all have CF, offering hope, support, and news in the world of cystic fibrosis.

CF Community Blog – Stories on a wide range of topics from the national CF community.

Patient Advocacy

Advo Connection – Search here for patient advocates in New York City, Buffalo, Rochester, Cronwall on Hudson, Yonkers, Syracuse, Amherst, Albany, Schenectady, Utica, Niagara Falls, White Plains, Troy, Binghamton, Ithaca, Watertown, Plattsburgh, Jamestown and other areas of New York.

Sick Girl Speaks – Tiffany Christensen has CF, has had 2 lung transplants, and now works as a patient advocate.  You go girl!  Inspirational Resource!

Connecticut Advocacy  – Link is from Connecticut, but resources can apply for general patient advocacy around the US