Blog

The O2 Olympics

A Guest Blog by Kathy Russell

As the country gears up for the Olympics, I have been thinking of events that we who have supplemental oxygen (O2) could participate in. Do you remember rhythmic gymnastics? That is the event where people twist, turn, jump and dance with a ball or a long piece of fabric. Continue reading The O2 Olympics

The CFChef Winter Holiday Recipe Contest

Are the hot and humid days of summer getting to you? To cool off, think Christmas in July, as the CFChef program kicks off its Winter Holiday recipe contest.

The CFChef Winter Holiday recipe contest – which starts today, July 20, 2012 – is looking for festive and flavorful cystic fibrosis-friendly recipes for Thanksgiving, Christmas, Chanukah, and more by September 14, 2012.  Continue reading The CFChef Winter Holiday Recipe Contest

Saving Money with Patient Assistance Programs

Many manufacturers of medications used by CF patients offer patient assistance programs to assist individuals with insufficient or no insurance coverage to obtain medications. Programs vary in their offerings from sampling products, providing nutritional supplements, and co-pay assistance. Continue reading Saving Money with Patient Assistance Programs

FDA Safety and Innovation Act Signed: A Monumental Step Toward The Development of Safe and Effective Treatments for Millions of Americans With Rare Diseases

Approval Culminates Years of Advocacy, Education and Relationship-Building Led by NORD

July 9, 2012, Washington DC—-The FDA Safety and Innovation Act, signed by President Obama today, contains the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983, the National Organization for Rare Disorders (NORD) said. Continue reading FDA Safety and Innovation Act Signed: A Monumental Step Toward The Development of Safe and Effective Treatments for Millions of Americans With Rare Diseases

Congratulations to Tyler Smith, Our Newest Hero of Hope!

This month’s Hero of Hope Living with CF, Tyler Smith, 17, is a junior in high school and excited to go to college to pursue his dreams. Tyler has an extremely positive attitude and does not let his CF define him or get in the way of what he wants to get out of life. Continue reading Congratulations to Tyler Smith, Our Newest Hero of Hope!

Guest blog by Jeanie Hanley, ll

Paradoxic Optimism
You may have heard enough of this topic after a previous CFR issue being devoted to optimism and pessimism, but I had to get this one off my chest – maybe literally as you will see. Yes, I consider myself an optimist, but have you ever heard of the term, “seeing through rose-colored glasses”? Continue reading Guest blog by Jeanie Hanley, ll

CF Wind Sprint 26: Working Out on the Road

The Boomer Esiason Foundation has posted CF Wind Sprint 26: Working Out on the Road on its website. CF Wind Sprints is a series of brief videos addressing a variety of topics relevant to living with CF, including traveling, nutrition, exercise and treatments.

In this latest video, BEF Volunteer Jerry Cahill shares his favorite tips for exercises Continue reading CF Wind Sprint 26: Working Out on the Road

Guest Blog by Jeanie Hanley–Happy 50th!

Happy 50th!
Reaching my 50th year milestone this week had a different feel to it than previous “milestone birthdays” and also was unique compared to that of most non-CFers. At the same time, it was very much like your run of the mill 50th. I received the tried and true jokes of reading eye glasses, Continue reading Guest Blog by Jeanie Hanley–Happy 50th!

Abbott Expands CFChef Program in 2012 for People Affected by Cystic Fibrosis

Abbott today announced the launch of four themed recipe contests as a part of the CFChef program, an online nutrition resource developed to address the specific nutritional needs of people living with cystic fibrosis (CF). The CFChef program will host “Cookout” and “Back-to-School” recipe Continue reading Abbott Expands CFChef Program in 2012 for People Affected by Cystic Fibrosis