Meet our Amazing Team!
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 me 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
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’m currently on a clinical trial for Amicus Therapeutics for a new Enzyme Replacement Therapy.
Hi. I am a retired ex teacher living on a lifestyle block north of Auckland . I am the mother of two boys and grandmother of two fantastic grandchildren.
I was diagnosed with Pompe in 2013 in my early 60s though I think I started to develop symptoms about 20 years earlier. In 2017 I was accepted into a clinical trial. It felt like winning lotto as there was no chance of receiving treatments in New Zealand. After two years travelling fortnightly to Adelaide we now have our infusions in Auckland. All is going well. While Pompe does make life more challenging sometimes, having access to treatment has meant that I can make the most of my retirement.
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.
Hi. I am the husband of Christine. I am a retired seafarer spending my retirement looking after my many animals and restoring my 75 year old launch.
I am on the committee to support Christine and the other members of the Pompe Network as they endeavor to gain New Zealand Pompe Patients access to treatment through our health system rather than rely on drug trials or the generosity of drug companies.
Executive Committee Members – this includes our Board
Brad is Executive Director and past president of Canadian Association of Pompe (CAP). In 2006, after four years of testing, Brad was diagnosed with Pompe disease. It was a surprise but, in retrospect, not surprising as he can remember symptoms even back as a child. He sits on the Volunteer Engagement Advisory Committee for Muscular Dystrophy Canada and volunteers through the local chapter. Brad supports local charities through 100 Men Who Care, and is constantly inspired by what they do. He has served on advisory boards and in his current role looks for opportunities for CAP to partner with other organizations on common goals. Brad is a proponent of early diagnosis through newborn screening and proactive management of our health.
Honourary Medical Advisor to NZPN
Dr. Barry Byrne
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.