NZPN Board
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Allyson Lock Rob Turner Christine Turner Catherine Chilton Ryan Colburn
President Vice President Secretary Treasurer Committee Member
Executive Committee Members - this includes our Board Members (as above)
Allyson Lock - President and Life Member of NZPN
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 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.
Short Bios about us...
Allyson - President
I was born in 1964 in Napier, Hawkes Bay. Adopted along with my twin brother who also has Pompe disease. I have 3 sons and 2 gorgeous granddaughters. I live on a lifestyle block with my husband, horses, chickens, ducks, geese, cows and sheep and 12cats. I'm currently on the International Compassionate Access Program (ICAP) generously provided by Sanofi. It's an Enzyme Replacement Therapy (ERT). I've been on it since 28th March 2017 and it has kept my health stable, for which I'm eternally grateful.
I was born in 1964 in Napier, Hawkes Bay. Adopted along with my twin brother who also has Pompe disease. I have 3 sons and 2 gorgeous granddaughters. I live on a lifestyle block with my husband, horses, chickens, ducks, geese, cows and sheep and 12cats. I'm currently on the International Compassionate Access Program (ICAP) generously provided by Sanofi. It's an Enzyme Replacement Therapy (ERT). I've been on it since 28th March 2017 and it has kept my health stable, for which I'm eternally grateful.
Rob - Vice President
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.
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.
Christine Turner - Secretary
I’m married to Rob and have two adult children and two gorgeous grandchildren. I am a semi-retired primary school teacher.
We live on a lifestyle block in Albany, Auckland, and have 21 angora goats, 2 steers, 8 chickens and a dog and a cat.
I’m married to Rob and have two adult children and two gorgeous grandchildren. I am a semi-retired primary school teacher.
We live on a lifestyle block in Albany, Auckland, and have 21 angora goats, 2 steers, 8 chickens and a dog and a cat.
Catherine Chilton - Treasurer
I was diagnosed in August 2025, after what appears to be a short time, of just under three years. It is a journey that no-one ever expects to be on, but once on, it opens up a whole new world of knowledge and connections.
You become an advocate, start to understand genetics and become a member of our heath system, with the first being the most important.
Married with two adult sons, I am a book-keeper, working for myself - living in Nelson.
I am a newbie and the experience and knowledge of the other committee members can never be underestimated.
I'm incredibly fortunate to be on the International Compassionate Access Program (ICAP) generously provided by Sanofi, for Myozyme which is an Enzyme Replacement Therapy (ERT). I am trying to work with exercise and diet moving forward to give myself the best chance but one of the limitations I am finding out – is that New Zealand does not have the numbers to make things easy.
I was diagnosed in August 2025, after what appears to be a short time, of just under three years. It is a journey that no-one ever expects to be on, but once on, it opens up a whole new world of knowledge and connections.
You become an advocate, start to understand genetics and become a member of our heath system, with the first being the most important.
Married with two adult sons, I am a book-keeper, working for myself - living in Nelson.
I am a newbie and the experience and knowledge of the other committee members can never be underestimated.
I'm incredibly fortunate to be on the International Compassionate Access Program (ICAP) generously provided by Sanofi, for Myozyme which is an Enzyme Replacement Therapy (ERT). I am trying to work with exercise and diet moving forward to give myself the best chance but one of the limitations I am finding out – is that New Zealand does not have the numbers to make things easy.
Ryan - Committee Member
Ryan has some genetic variants, just like everyone else. In 2015 he learned that some of his variants are associated with a rare metabolic disorder, Pompe disease, and he has unapologetically altered course ever since. His professional background is in development, engineering and operations management: as applied to race cars, airplanes, rockets, satellites… and rare disease. Ryan is a driven student of process, (it is everywhere), and in this context, he is applying what he’s learned along the way to contribute to the health of the rare disease ecosystem. He is passionate about empowerment and engagement, and shifting the view of patients as “subjects” to one of participants, collaborators, and partners who can help to find the most effective ways to accelerate progress on understanding and solving challenges in rare disease.
Ryan has some genetic variants, just like everyone else. In 2015 he learned that some of his variants are associated with a rare metabolic disorder, Pompe disease, and he has unapologetically altered course ever since. His professional background is in development, engineering and operations management: as applied to race cars, airplanes, rockets, satellites… and rare disease. Ryan is a driven student of process, (it is everywhere), and in this context, he is applying what he’s learned along the way to contribute to the health of the rare disease ecosystem. He is passionate about empowerment and engagement, and shifting the view of patients as “subjects” to one of participants, collaborators, and partners who can help to find the most effective ways to accelerate progress on understanding and solving challenges in rare disease.
Dr. Barry Byrne - 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.