Allyson Lock Samantha Lenik Vaughan Thomas Steve Lock Christine Turner
President Vice President Secretary Treasurer Committee Member
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.
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.
Vaughan - My daughter who lives in Melbourne was diagnosed with Pompe Disease in 2010 at age 30. I became active with the Australian Pompes Association because Myozyme was not funded by the government for patients. I was proud to have been part of the successful campaign to get funding in Australia but as a Kiwi I was determined to help achieve the same in New Zealand. I had met Allyson initially through a Pompe newsletter and decided I had to help the people in my country to get the treatment they need.
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.