Sam Bartels – Secretary
I am the father of two beautiful girls, Leah and Anya. Both girls have a rare terminal genetic encephalopathy, encompassing seizures and a raft of other conditions. Angel Leah passed away peacefully at home in March 2015 at the age of two and a half after a long stay (one of many) in hospital. Leah had been through the long list of medications put together by Starship Children’s Hospital and an application for Sativex was about to be made, sadly the current system’s tight criteria meant that the availability of this option was “too little, too late”.
I would like to see compassionate access to safe MC products. I would like to see that seriously ill children should not have to exhaust a list of over a dozen medicines before having the option of being able to trial MC, and in terminal conditions, it should be the parent’s choice as to what medications their child is on. I believe that adults should have the option to use MC without discrimination. It is also important that doctors and the health sector, in general, are better educated about MC.
My wife and I work part-time while also caring for Anya. I have a Ph.D. in Computer Science and work as an IT Research Engineer. I am reliable and approachable with the ability to relate effectively and sensitively to people from a variety of backgrounds and cultures. I have excellent communication skills, and I enjoy challenges and learning new concepts.
Shane Le Brun – Co-ordinator
I come from a military background, where I was once upon a time very narrow-minded about the concept of MC. However my wife injured her lower back, 3 months after we were married, and with the issues surrounding ACC in the late 2000s, obfuscation occurred, and treatment delayed, resulting in her being left with chronic pain despite finally getting the best surgical option available in NZ. I have witnessed the ups and downs of Opiate-based pain medications, Enemas, overdoses induced by an ambulance crew, and neonatal withdrawals from opiates of our new-born son.
Because of my technical military background, where I was first of my peer group to get promoted to corporal, I have developed some transferable skills, small team/first-line management, adult education, and many others. Since leaving the Army I have studied ICT for 2 years and am currently working as a Server Administrator. I have developed a sound knowledge of analgesics, and strongly support the concept of standardised MC products as an alternative to the harder pain medications.
Since running out of options for my wife I have been active in the MC community, particularly running a website and blogging some patient stories, and after nearly 2 years observing I feel that a reputable charity is the way forward, and not the negative picketing and online abuse hurled at certain politicians, which only tarnishes the MC movement generally and distracts people from the core issue, the patients. I hope with my background to be able to pull together a small team of motivated people and keep them motivated for the sake of the patients, of all ages and disabilities.
Conflicts of Interest, Former NZMCC Board Member, Contracting in the industry as Te Rongoa Pai Consulting Ltd, including to JC Logistics Ltd, and historically to Rua Bioscience and Tasman Botanicals ltd.
Deborah Sutherland – Trustee
Gareth Duff – Trustee