For those who are interested, there is a consumer training evening coming up that you are welcome to join in:
You can download the agenda here
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.
As 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.
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.
Please obtain a new ongoing referral and hand in to Outpatients and also give a copy to your CF nurse