TITLE: Understanding CF Lung Therapies

Dr. Joan DeCelie-Germana, director of the CF Center at Schneider Children’s Hospital in New Hyde Park, New York, and assistant professor of pediatrics at the Albert Einstein College of Medicine in the Bronx, New York discusses the importance in maintaining a consistent daily treatment regimen to manage lung disease.

· With the help of today’s CF lung therapies, CF patients are now living longer and more active lives than ever before.
· Pulmonary treatments, especially the standard therapies, are critical to helping CF patients stay as healthy as possible.
· For optimum health, it’s important to adhere to a doctor-recommended treatment schedule each day, and to take the treatments in the right order.
· A recommended order of daily treatment for a CF patient is Bronchodialator, Pulmozyme® (dornase alfa), The Vest or similar chest wall oscillator, and then TOBI® (tobramycin solution for inhalation), but your doctor will recommend the treatment schedule that’s right for you. Add-on therapies such as hypertonic saline may be appropriate for certain patient populations.
· Getting regular physical exercise and following a nutritious, high-calorie diet are also important for maintaining good health.

Title: CFRI TEEN & ADULT DAY RETREAT

The CFRI Retreat is August 6th and 11th in Menlo Park, California for teens, 15-18 years and adults with cystic fibrosis, their family members and health care providers. The event is fun, educational and a safe environment to meet some great friends!


The retreat provides a safe and welcoming environment aimed at enhancing positive coping skills, social support and education for people who share common experiences with CF.

Activities include daily exercise, arts & crafts, rap sessions, and educational workshops with guest speakers.

Cost is $65  per person for entire week.

Scholarships available.

Safety is a top priority: ALL people with CF are required to comply with cross infection behavioral precautions. A medical advisor is available at all times, and volunteers are available to assist with respiratory treatments.

For more info: http://www.cfri.org/home2.html

Title: Emily Schaller “Rocks CF? through rock & roll music…

1. Emily Schaller is 24 years old with cystic fibrosis and living in Detroit, Michigan. Emily believes her goal in life is to “spread awareness? about cystic fibrosis and is doing so in her rock and roll band. www.letsrockcf.org .Emily was diagnosed at 18 months
2. “I attended CF camps when I was younger but they were shut down due to cross contamination… so now people with CF go to cystic fibrosis chat rooms? states Emily.
3. “Time management? is Emily’s biggest challenge due to all the therapy compliance.
4. Emily is allergic to most medications therefore needs to be in hospital for iv antibiotics vs. home care.
5. Emily’s passions include rock & roll and Broadway shows.
6. Activities such as drumming and jogging help keep Emily healthy.
7. Emily is a drummer in a rock & roll band called “HELLEN? and her brother Jason is also in a band called “SOUTH NORMAL?.
8. Detroit Rocks CF is a group of 12 local bands that play music for a worldly cause and have a benefit for CF called “Just Let Me Breath?
9. Let’s Rock CF music cd available at: www.letsrockcf.com.
10. “Keep going… stay active… play in a band or play sports… and live your life to the fullest…? Emily’s advice to others with CF.