Waldenström's Macroglobulinemia Support Group

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History of Waldos

The beginning of the group began when Sal Simson and Peter Phelan happened to be sitting in adjacent chairs in the chemo day ward when it was based at the SI Bone Marrow Unit at Christchurch Hospital in early 2009.
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 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 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.

When 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 WN-NZ with a brown Kiwi.

Later 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.

"I happened to comment to Michael Van Ewijk of WMozzies, who had designed the WMozzies logo, how much I liked the Australian logo with its Kangaroo and Michael offered to make up a logo for NZ. Michael's logo was with the Kiwi but in black and white which I thought very New Zealand, but realised that a new logo needed to also have Waldos included so had a go myself with Michael's Kiwi and software called Gimp. It is only of a low resolution so just suited for a website but Peter Phelan is going to make a high quality vector version of it suited to all purposes.

Making up a new logo for the group and thinking of how to reach out to others who were looking for information led to developing a simple website with links which I hope will inform more people about our quirky Waldos and also be simple enough not to overwhelm with information. So here you are at https://waldos.kiwi