Hunter Syndrome 20 Sep 2006 Hospital Won't Fund ERT We’ve received a bit of new information. The hospital has tentatively said no to funding Trey’s ERT. We’ll get final confirmation today, but from the doctors I have talked to,… mcfadyena
Hunter Syndrome 11 Sep 2006 Orphan Drug Policy and Family Update We had an appointment with our specialist, Dr. Stockler, today. We think she's awesome and are so glad it's her who we meet with on a regular basis. We talked… mcfadyena
Hunter Syndrome 10 Sep 2006 BC Children's Hospital declined funding BC Children’s Hospital has declined the request to fund ERT for Trey. They argue that there is not enough evidence that Elaprase (the ERT for Trey) will work, and that… mcfadyena
Hunter Syndrome 09 Sep 2006 Where We Are at Today Where to begin... Pretty much has soon as we found out Trey had Hunter's, we found out that there was no treatment available yet, but that there probably would be… mcfadyena
Hunter Syndrome 24 Jul 2006 Elaprase approved by the FDA Elaprase, the drug that Trey needs has been approved by the FDA. Now the battle really begins to get Trey the treatment here in Canada. Because Health Canada has not… mcfadyena