Waldos History
The beginning of the group began in early 2009, when Sal Simson and Peter Phelan happened to be sitting in adjacent chairs in the chemo day ward when it was based at the South Island Bone Marrow Unit at Christchurch Hospital.
A nurse approached and asked "You have Waldenström's don't you?" Peter replied "Yes", before he realised the nurse was talking to Sal.
Peter had written (via snail mail) and received information from the IWMF (International Waldenströms Macroglobulinemia Foundation) in 1996 when it was almost a one man band with Arnold Smokler based in Florida.
Sal and Peter talked of forming a NZ patient's group affiliated to the IWMF and Sal agreed to be the contact person which set things in motion.
The IWMF Torch issue of July 2009 was the first to record Sal as the New Zealand Support Group contact. Unfortunately Sal's time in this role was brief, as sadly, she passed away four months later. Peter was on a project in Perth at the time, and received an email from Russell, Sal's husband, informing him of her passing. After a successful chemo regime Sal had developed a rare complication of WM where the central nervous system was affected (Bing-Neel syndrome). Peter says 'In the brief period of our friendship it became apparent that Sal was a selfless person who willingly gave her time to help others. I think it is important that the record shows that she was the original founder of our support group'.
Michael Goldschmidt was asked by the IWMF to be the next co-ordinator. The magazine NZ Doctor 30/06/2010 on page 26 under General News, published a piece "New Support group for WM sufferers." In the article which had information about WM, it also stated that "Michael had contact with the nine New Zealanders who contacted the US foundation, but believes there are more people in New Zealand diagnosed with WM who are not aware of the foundation."
The name Waldos came about when Peter and Michael were enjoying a coffee in Sumner and they thought the group should have a name. Peter thought up Waldos and so it became.
Michael planned a meeting in Auckland in 2010 and a few people were able to attend.
He and his wife Bronwyn enjoyed cycling together and Michael gardening at their Redcliffs home and he was very involved in his local community in Christchurch. When Lea Hullett attended her first haematology appointment, Michael met her for lunch at the Boat Shed which was a popular venue being very near the hospital. He kept in touch and Lea called on him later and as his health was failing from another condition, Michael asked Lea to take over the group towards the end of 2017. The number of WMers was about 23 at that time.
The IWMF were making a list on their website of all affiliates worldwide we each had to have a logo. Not knowing the history about Waldos Lea made up a logo with only WN-NZ with a brown Kiwi supplied by Elena Malunis who was in charge of the International community at that time.
Peter Phelan contacted Lea with the history of the group which Lea sent to the NZ list and no-one objected to the name Waldos being reinstated.
Lea, having been a designer since 1999 set up a web site about our New Zealand support group with links to the IWMF for patients could find reliable information about our quirky Waldenströms and also simple enough not to overwhelm. Information has to be factual and not just someone's opinion which might not have evidence based facts
Unfortunately not many treatments were available for our small number. Janssen pushed Pharmac to fund Ibrutinib, the first line BTK inhibitor available overseas since 2014. In 2022 Janssen contacted Lea and gave advice on how to go about encouraging patients to write individual letters asking that Pharmac fund Ibrutinib. Pharmac didn't consider us even though Ibrutinib was funded for CLL, a more common blood cancer.
In 2023, Mel Arnold, a young mother of four, and a PhD candidate with Health NZ, and a member of Waldos having WM. Mel presented Pharmac with a paper "Patient experiences and perspectives on living with Waldenströms Macroglobulinemia – For the funding of Ibrutinib in Aotearoa. A perspective paper." In spite of her very professional paper, her efforts fell on deaf ears.
Lea, who was nearing 80 and feeling she was not getting any younger, invited people to form a committee. Rick Robinson and Barney Stephenson joined her as committee members in late 2025. In May, 2026, Mel took over from Lea as Lead. Mel was working with two haematologists, Dr Ruth Spearing and Dr Samar Issa (Medical Advisors), who felt it unfair that Waldenströms patients had very limited treatment options in NZ, and they joined us on committee.