Here at the Utah Valley Institute of Cystic Fibrosis, we believe that knowledge is indeed power. We believe that CF patients and their families can understand new research findings about CF from the scientific community, and that they can put this knowledge to work in negotiating their treatment with their medical professionals.
One of the most important tools that you should be using is PubMed. PubMed is one of the most wonderful government services funded by your tax dollars. Through the National Institutes of Health, the US government has created an online compilation of every medical article abstract for thousands upon thousands of medical journals, US and foreign. The PubMed search page is where you type in keywords that will pull up related abstracts going back to the 1970s and as current as this very year. Refine your search by adding words that will narrow the results you will receive. PubMed articles are sometimes free in their entirety, but you can also ask your library to inter-library loan the articles for which you have gotten citations from PubMed. PubMed will also let you link to articles that have cited the one you are looking at, and also articles that appear to be related to the topic of your article.
PubMed--once you try it, you'll be hooked!
Resources on Our Website
Our Institute has uploaded numerous papers and links to allow you to research a variety of topics more fully.
Don't be fooled: cystic fibrosis is not just to be treated with high performance antibiotics and drugs. There is an important place for nutritional adjunctive therapies as well. On this page, we explore a few of the more important elements.
The Institute has sponsored two clinical trials related to the use of both oral and inhaled glutathione (CF) as a therapy in cystic fibrosis. This page will acquaint you with glutathione, as well as other related therapies such as arginine.
If you have cystic fibrosis, someone in your family is a carrier. If you are related to someone with cystic fibrosis, there is a non-trivial chance that you are a carrier. There are distinct health challenges associated with carrier status, and on this page we discuss some ways for carriers to keep themselves in good health.
NACFC and ECFC Abstract Summaries
As noted on our homepage, we also sponsor the yahoo group called wlgroup2, and in the archives of that group, you will find abstract summaries for the North American and European Cystic Fibrosis conferences going back to 1999. In the archives of that group, search for subject headings that contain NACFC and ECFC.
Other CF-Related Websites We Find Useful
- CF Legal Hotline: This hotline, established by attorney Beth Sufian, has been invaluable in helping CF patients and their families navigate the complex legal statutes surrounding SSI, Medicaid, and other important entities.
- Cystic Fibrosis Pharmacy in Florida (an independent pharmacy): This is a great pharmacy, with great prices and super service. It doesn't matter if you don't live in Florida, they can help you. They also do compounding!
- CFRI (Cystic Fibrosis Research, Inc.): One alternative to the CFF. CFRI promotes research, education, and support in the custic fibrosis community. However, their website is sponsored by Vertex, so to access some of the resources, you will be asked to provide your contact info.
- PACFI (Pennsylvania Cystic Fibrosis, Inc.): Home of Burke's Bear! PACFI raises money to fund research that would otherwise not be funded, such as research into glutathione. It also provides assistance to needy CF patients.
- Patient Support Groups: Beware of patient support groups funded by pharmaceutical companies--they are much more interested in having you support them than vice versa! Here are a few that do not appear to have such ties: Cysticlife.org and Cysticfibrosis.com (the latter is a part of Medwise).