New Link

May

The Power of Two On-Line

The Power of Two, an inspirational movie documenting the journey of twins living with CF, is now available on-line through linktv.org. We have added a new The Power of Two page that contains a link to the movie as well as brief description. The movie runs about an hour and a half -- you will find it time well spent.

May

Fun Video Explains CF

The Cystic Fibrosis Foundation has produced an animated video which provides a clear basic explanation of CF. This video can be a good introduction to families and friends of all ages. Check out the video by clicking here. This link has also been added to our About Cystic Fibrosis page.

May

Additional Resources

A new links have been added to our Information Resources in the Living with CF section. Information for Adults with CF - A series of articles published by CFF on a variety of topics ranging from treatment protocols to finances.

Apr

New video link

A new video link has been added to our Information Resources - Medical Care links page. The link takes you to the CFF archived Web cast on the Foundation's updated policy on infection prevention and control. The Web cast was originally aired on March 27, 2013.

Feb

Lots of Links

Several new links have been added to our Web site. Four links have been added to the Living with CF page in the "Daily Life" section. These links connect you to videos covering a wide range of topics typically encountered by people living with CF. 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. 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. CF Living Videos - CF Living produced a group of videos and Webcasts targeting young adults with CF and the issues they face in learning what is normal, sharing with friends and handling treatments. 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. Two links have been added to the Medical Care page; one in a new "Medical Issues" category and one under "Research." Respiratory/Lungs - The CFF produced a series of Web casts dealing with issues associated with pulmonary function including lung transplantation, sinus disease, chronic medications, airway clearance, exercise and second-hand smoke. CFF Webcasts - The CFF has produced a series of Webcasts relating to CF research including a 2012 research update, aspects of clinical trials and the drug development pipeline.  

Feb

Video for Educating School about CF

Being a "normal kid" at school can be a challenge. Part of that challenge is developing an understanding with teachers, administrators and others in the school system. The Cystic Fibrosis Center at the Nemours Children's Clinic has produced a video that can help educate the educators. The center’s ARNP, Kathryn Kinyon-Munch, spearheaded the effort by writing the script and getting the funding for this video which was professionally filmed and edited.  The folks in the beginning are actors; the kids at the end are patients at the Nemours Children's Clinic. The video is available on YouTube so it can be easily shared with staff in your school. We've also put a link to the video on our "Living with CF" page.  

Jan

Scholarship and Grant Resources

The Financial Assistance page has been updated to include additional resources available to people living with CF. The new links include the Cystic Fibrosis Lifestyle Foundation which offers recreation grants to help people living with CF access the benefits of physical and social activities. In addition to the two local educational scholarships, links are also provided for national organizations. A separate scholarships page has been added to handle the large number of such scholarships.

Jul

Info on the Health Care Law

The implementation of the Affordable Care Act is now more realistic with the recent Supreme Court ruling. Despite the amount of publicity generated around this topic, it can be difficult to learn how this legislation may affect individuals. In an effort to promote understanding of the implications of the new health care law, two new links have been added to our site on the Medical Care page in our Information Resources section. An explanation of the various components of the Affordable Care Act (including full text of the law) is provided in the section entitled The Health Care Law and You on the HealthCare.gov site published by the US Department of Health & Human Services. Consumer Reports has also published a Health Care Reform Update which deals with the major components broken down by their effective dates.

Jun

Kids Wish Network

Kids Wish Network is a national that grants wishes to children living with life-threatening illnesses.  The organization brings smiles to many deserving children who just need a break from their illness. A link to the Kids Wish Network site has been added to our Information Resources - CF Related Organizations section. Kids Wish Network, 501(c)(3) organization, grants wishes to children between the ages of 3 and 18 who have not had a previous wish granted by any organization.  The child must have a doctor verified life-threatening condition and be able to somehow communicate his or her wish, either verbally, with the assistance of communication devices, by pointing at pictures, shaking his or her head yes or no, by signing or any other way that we can indicate what the child’s wish is. There are several differences between Kids Wish Network and other wish granting organizations.  Kids Wish Network grants wishes to children with life threatening illnesses, which means that the condition does not have to be terminal; they want the wish children to get better.  They also understand that not all of our wish children will recover, that is why they also offer funeral assistance to families whose child received a wish through their organization.

May

Clinical Trial Alerts

Stay up to date on cystic fibrosis research with a new link on our Information Resources - Medical Care page. The CF Foundation offers an e-mail notification service to inform subscribers when a clinical trial is posted and when clinical trial results are available. The Clinical Trial Alerts link takes you to the sign-up page on the CFF site. The only information required to subscribe is your first and last name plus your e-mail address. Once you submit your request for the alerts, you will receive an e-mail with a link to activate your account. Once your account is activated, you will receive alerts as new trials are launched or results are published.