Cystic Fibrosis Canada recently added a comprehensive guide to CF genetics, physiology, symptoms and treatments to their web site. Here is the press release:
Cystic Fibrosis Canada announces launch of free cystic fibrosis e-learning module
September 12, 2017 (Toronto) – It’s back to school season and thanks to a new educational resource from St. Michael’s Hospital, anyone can now easily upgrade their knowledge of cystic fibrosis (CF) to better help their patients, clients or loved ones.
The CF e-learning module contains a multitude of information that provides a comprehensive overview of CF to better equip people with the tools they need to understand this complex disease. The interactive format allows users to learn at their own speed and is great for professional or personal purposes.
The e-learning module was developed by Dr. Anju Anand and Dr. Melanie Chin from the CF clinic at St. Michael’s Hospital in Toronto in response to a need for better CF teaching resources. Cystic Fibrosis Canada is grateful for this undertaking and hopes that it is widely used by those affected by CF as we work together to care, treat and find a cure for Canadians living with CF.
You can access the Cystic Fibrosis eLearning Module by clicking this link. We have also added this link to our Information Resources, About Cystic Fibrosis page.
The module is presented in a slide show format. You can review all of the pages using "Next" and "Previous" buttons or you can select specific sections/pages using links in the menu displayed in the left margin. Some of the pages act as menus to a variety of related topics. In other cases, the text includes "i" buttons that access more detailed information in pop-up frames.
As stated in the press release, the e-learning module is useful for both medical professionals and others in the CF community without medical training. If you are inspired to learn more about particular topics presented in the module some pages include links to in depth information on other sites. We think you will find this to be a useful resource to expand or refresh your knowledge of CF as well as an aid in explaining CF to family and friends.
Cystic Fibrosis Foundation has released a comprehensive reference document geared to the adult CF population. Their release states:
The face of cystic fibrosis is changing as adults with CF now outnumber children with the disease. As more people with CF reach adulthood and live independently, their needs change. The Adult Guide to Cystic Fibrosis is designed as a reference on many aspects of adult life with CF.
Being an adult with cystic fibrosis brings on some pretty distinct challenges. The Adult Guide to Cystic Fibrosis is a resource to help you manage your life and draws on the expertise of clinicians from adult CF programs, the Cystic Fibrosis Foundation, and others living with CF.
Whether you're an adult, a teen preparing to transition to an adult CF program, a parent of a child looking ahead, or a friend or relative of someone with CF, you'll find answers and insights in the Adult Guide.
The document provides 215 pages of information on 26 topics. There a two ways to obtain a copy of this document:
From the CFF web site: https://www.cff.org/Life-With-CF/Daily-Life/Adult-Guide-to-Cystic-Fibrosis/
Download from our reference library: Adult-Guide-to-CF
Links to the guide have been included on our Information Resources, Life with CF page.
Consistent with their mission "to provide all people living with cystic fibrosis the opportunity to leave full, productive lives," CFF has launched a new section on their web site titled Family Planning and Parenting With CF. The section is introduced with the following statement:
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.
The information offered in the this new resource is presented in four topic areas, each with four component articles. The sections, with their related descriptions, are:
Making Your Family Planning Decisions - Deciding to have a child when you have cystic fibrosis requires a great deal of planning. Fortunately, addressing some key questions can help you navigate the family planning process.
Pregnancy and CF - Although most women with cystic fibrosis are able to become pregnant, there are still many factors to consider. Before you decide to pursue pregnancy, it is important to understand the key implications.
Alternative Ways to Build a Family - As a person with cystic fibrosis, you may be interested in pursuing other family building options besides pregnancy. By learning more about the different ways that you can have children, you can ultimately find the best method for you.
Parenting as an Adult With CF - Parenting as an adult with cystic fibrosis can be a difficult balancing act. By learning more about parenting with CF and its potential challenges, you can ultimately find the best tips and strategies to be the parent you want to be.
These new resources are not only an extension of the CFF mission statement, they are also a reflection of the success the Foundation has fostered in extending the life expectations for the CF community.
A link to this new section has been added to our Information Resources, Life with CF section under the General Information heading.
The discovery of the CF gene gave rise to the dream of a "cure" through gene therapy. Gene editing is one of the techniques being investigated; however, the method and its applications may not be understood within the affected portions of the general population; e.g., the CF community. To address that knowledge gap, the American Society of Gene & Cell Therapy issued a white paper entitled Therapeutic Gene Editing.
The introduction to the white paper notes:
Gene editing is a process that repairs or changes a gene. Medical researchers are exploring ways to use gene editing to treat or prevent human diseases. According to a recent public opinion survey, Americans are both excited and concerned about this. Given the complexity of gene editing and the rapid pace at which the science is progressing, it is no wonder that the public is both intrigued and perhaps uneasy.
The white paper is directed to the general public rather than medical professionals. Therefore, the document is a good basic resource for those who are curious about the science and regulation of gene editing.
You can read and/or download the white paper here: TherapeuticGeneEditingWP_Nov21_v1
A link to this white paper has also been added to our Information Resources, Medical Care page.
Cystic Fibrosis Foundation has announced a new section of their web site devoted to promoting better nutrition in the CF community - Nutrition and Your Digestive System. This section provides comprehensive information on the various aspects of nutritional health. Here are the subtopics in this new section:
Taking Care of Your Digestive System - If you have CF, you have sticky mucus in your digestive system. You need to take enzymes to digest food and medications to stay regular. Doing this will help you grow, maintain your weight and fight lung infections.
Getting Your Nutrients - Nutritional needs for people with cystic fibrosis are determined by their degree of malabsorption, activity level and the severity of lung disease. Individuals with CF typically need 1 ½ to 2 times as many calories as people without CF.
Protecting and Maintaining Bone Health - People with cystic fibrosis are living longer than ever. As people age, bones get weaker and break more easily. Let’s look at different ways that this can be prevented with nutrition and exercise.
Tube Feeding: Another Healthy Option - Tube feeding can be a great way to get the calories and nutrients that you or your child with cystic fibrosis need to gain and maintain a healthy weight. Explore this as an option with your CF care team.
Good Nutrition for Kids With CF - Good nutrition for children with cystic fibrosis means high-calorie foods, enzymes, vitamins and minerals. It also can mean accepting tube feeding as a way to help your child thrive.
A link to this resource has been added to our Information Resources - Life with CF page under the Daily Life heading.
The Cystic Fibrosis Foundation has made improvements in the tools you can use to learn more about CF research. Here's the text of their announcement:
We have seen dramatic advances in our search for new treatments, due in large part to people with CF participating in clinical trials. To support our growing body of research and ensure as many people with CF as possible can participate in these trials, we have improved the design and functionality of our Clinical Trial Tools.
The Clinical Trial Finder now makes it easier than ever to find trials by location, mutation, age and more -- as well as contact research coordinators about a specific study from within the tool.
The Drug Development Pipeline clearly and quickly shows what phase each drug is in, including pre-clinical development programs.
We encourage you to take a look at the new tools.
These links have been added to our Information Resources Medical Care page under the Research heading.
When things are happening around you - happening to you, any control you can exercise will boost your spirits. That's the basic idea behind Booster Jots. Learn about the concept and how to use it at BoosterJots.com.
The concept was developed by Kori Tolbert Doherty through her own experiences. Read about her journey from self-help to sharing this empowering strategy by clicking "Kori's Story" in the menu bar at the top of the Booster Jots site.
A link to Booster Jots has been added to our Information Resources, Life with CF page under the "Brighten the Day" heading.
Our Cystic Fibrosis Journey is a YouTube channel dedicated to life stories posted by individuals living with CF. An article published in Cystic Fibrosis News Today stated that the channel will now feature daily posts from seven people - one posting each day of the week. CFFC will share interesting contributions from this channel on our Facebook page.
The Our Cystic Fibrosis Journey link has been added to our Information Resources section on the Life with CF page.
UPDATE: According to Cystic Fibrosis News Today, a member of the group that initiated this channel submitted the following message: “Sorry all, due to differences in the group the channel is no longer active. The original group creators have also decided to delete all of the content that was on this channel. Very unfortunate, and hoping to bring back something like this in the future.“
Introducing another YouTube channel dedicated to life with CF - Cystic Fibrosis Tips n' Tricks. The link is to the home tab for Anne Barkley's channel; click the “Videos” tab to find her topics as they are added.
This link has been added to our Information Resources, Life with CF page.
Paying for appropriate care is one of the many challenges faced by people living with CF. We have added a link to another possible source for financial assistance - HealthWell Foundation. According to their web site:
The HealthWell Foundation provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies. If you've been prescribed a medication and your insurance company covers it, but you still cannot afford the coinsurance or copayment required, we may be able to assist you by paying for part of your costs associated with the medication. Also, if you are eligible for health insurance, but cannot afford the insurance premium, we may be able to assist with your insurance premium.
The HealthWell Foundation offers assistance to individuals dealing with a wide range of health issues. They have a program geared specifically to CF which you can find at Cystic Fibrosis HealthWell Foundation. According to their web site:
The Cystic Fibrosis Fund is designed to assist eligible people living with cystic fibrosis with cost-shares associated with CF-specific treatments. In addition, HealthWell is also able to assist with the full cost of vitamins, supplements, hypertonic saline solution, nebulizers paired with treatments, and certain handsets. We are committed to supporting the CF community and the established guidelines around our covered product list are meant to focus on the areas of greatest need for the majority of people living with CF. We understand there are additional areas to be addressed and, over time, it is our hope to be able to expand our coverage even further.
Please note that we are not able to assist with special requests outside of our covered product list at this time.
The link to the Cystic Fibrosis HealthWell Foundation has been added to our Information Resources, Financial Assistance page.