Allyson Lock, MNZM Samantha Lenik Steve Lock Christine Turner Rob Turner
President Vice President Treasurer Secretary Committee Member
Executive Committee Members - this includes our Board
Honourary Medical Advisor to NZPN
Dr. Barry Byrne is the Associate Chair of Pediatrics and Director of the Powell Gene Therapy Center. He obtained his B.S. degree from Denison University, his M.D. and Ph.D. from the University of Illinois. He completed his Pediatrics residency, cardiology fellowship training and post-doctoral training in Biological Chemistry at the Johns Hopkins Hospital. He joined the University of Florida in 1997 and is now the Earl and Christy Powell University Chair in Genetics. Dr. Barry Byrne is a clinician scientist who is studying a variety of rare diseases with specific attention to developing therapies for inherited muscle disease. As a pediatric cardiologist, his focus is on conditions that lead to skeletal muscle weakness and problems in heart and respiratory function. His group has made significant contributions to the understanding and treatment of Pompe disease, which a type of muscular dystrophy due to abnormal glycogen in the muscle. The research team has been developing new therapies using the missing cellular protein or the corrective gene to restore muscle function in Pompe and other inherited myopathies.
Short Bios about us...
Allyson - I was diagnosed with Pompe disease in July 2010. Because of a lack of funded treatment in NZ I went on a clinical trial for a new ERT (enzyme replacement therapy) in August 2011. This trial medicine kept be stable for 5 years until the trial was cancelled. Since I was diagnosed it has been my goal to get funded treatment here in NZ, not just for me, but for everyone currently diagnosed and for those who will be diagnosed in future. No one should have to fight for their lives and fight their government for the necessary treatment.
I'm also a member of the RARE Global Advocacy Leadership Council. Please check out this link RGAL
Samantha - I am a mum to two gorgeous kids, a wife and a Fashion Blogger, and lastly I have Pompe. I was diagnosed in January 2014, and while it was a huge shock it also made me a fighter. I have raised awareness about the lack of funded treatment for us, and I will not stop fighting until I can see a change in the decision making processes of Pharmac. I currently fly every fortnight to Australia to take part in a clinical trial for Amicus Therapeutics for a new form of treatment.
Steve - Since Allyson was diagnosed in July 2010 it has been a real family affair. Not only is the patient affected, it affects the whole family. Family should not have the disruption of having their loved ones travel far away to take part in clinical trials just because our government refuses to fund Pompe treatment. Yet clinical trials are the only way Kiwis can get any access to a treatment for Pompe disease. It is great to be able to access clinical trials because we need new medicines, but it isn't great that a trial is the ONLY option available.
Christine - I was diagnosed with Pompe in 2013. In February this year (2017) I was fortunate to be accepted onto the Amicus drug trial in Adelaide. It felt like winning lotto! It is early days with the trial for me. So far, I have had no side effects and I think my walking is stronger. Things are looking good.