Category: Uncategorized

Diet Check: Heart Healthy Fats

Heart Healthy Fats [Standford University CF Centre]
BY MARIANNE REES SCHROEDER, RD
Milk, butter, cheese — For most adults living with cystic fibrosis, those
food items are staples in an everyday high-calorie, high-protein diet.
Fat found in dairy products pairs well with most meals, and is excellent
at boosting calories. But don’t be fooled. Dairy is not the only option
available. You’re probably well aware of avocado and trail mix, but what
sets these fats apart from fats found in dairy and butter?

Continue reading “Diet Check: Heart Healthy Fats”

An argument for treating youngsters while they’re healthy

Another terrific video from CFRI (Cystic Fibrosis Research International) with Jeff Wine who presents a must watch session on why its so important to treat youngsters’ infections aggressively even while they’re healthy. Jeff Wine has a CF daughter with a severe mutation (who is currently healthy in her 30s), he himself is a  Professor at Stanford and his presentations are incredibly informative.

Has your youngster  had re-occuring psuedomonas infections?

Are your doctors suggesting your child might have a chronic infection?

Are you doing everything you can to eradicate the infection?

Have you tried absolutely everything?

This is an absolute must watch for any parent facing these kinds of challenges with a young CF patient.

Support your CF Clinic before June 30th 2015

donateAs we are approaching the end of the financial year, we are appealing to individuals and businesses who may want to minimise taxes by making a donation to the Sydney Children’s Cystic Fibrosis clinic. All donations are guaranteed to be spent on resources that will enhance the quality of care for CF children in our clinic.

How you can help

Make a donation – your donation will help us lead the way in paediatric cystic fibrosis care at the Sydney Children’s Hospital.

To claim your tax deductible donation in the 20014-15 financial year, we must receive your donation before June 30th 2015.

How do I donate?

The best way to donate is by phone (02) 9382 1188 (Visa, Mastercard, Amex or Diners) and specify that your donation is to support the Sydney Children’s Hospital Cystic Fibrosis clinic. They will allocate your donation directly to our clinic and you should receive acknowledgement on your receipt that you have donated to the SCH CF Clinic.

Thank you in advance from all of us at Sydney Children’s Hospital Cystic Fibrosis Clinic.

Are donations tax deductible? Yes

Will I receive a receipt for my donation? Yes, it will be sent to you by email when approved and should note that you have a made a donation to the CF clinic.

Lumacaftor / Ivacaftor combo for DF508 > 12yrs

The Pulmonary-Allergy Drugs Advisory Committee of the U.S. Food and Drug Administration (FDA) held a hearing on May 12 to discuss Vertex Pharmaceuticals’ new drug application for approval of the lumacaftor/ivacaftor combination therapy for the treatment of cystic fibrosis in patients age 12 years and older who are homozygous for the F508del mutation.

This is one issue we should be following closely. We’ll keep you updated as soon as we have some news on the outcome of that meeting.