Honouring and paying tribute to representatives of CLLAN member organisations who have passed away:

The CLL Advocates Network is deeply saddened to learn about the passing of our friend Neil Graham, Founder and Executive Director of CLL Advocates Network New Zealand, a member of the international CLL Advocates Network (CLLAN). Neil passed away on November 15, 2021. He was the driving force and inspiring leader behind CLL Advocates Network New Zealand and gave an enormous amount of his time and professional expertise to establishing the organisation and advocating for the interests of CLL patients.

The CLL Advocates Network would like to express its deepest condolences to family, close friends and his exceptional team at CLL Advocates Network New Zealand who will continue Neil´s legacy.

As a physician and CLL patient himself, Neil gave a great deal of personal time to talking with and meeting CLL patients. Neil also maintained a persistent and consistent focus on getting better treatments for CLL patients, regularly engaging with Pharmac officials, petitioning and making submissions to Parliament, appearing before the Health Committee and the Pharmac Review Panel and engaging with media. Neil felt strongly about improving public understanding of CLL and providing better information for people living with it.

Over the years, the CLL Advocates Network and Neil developed a strong relationship. Neil was a speaker at CLL Horizons conferences and a great friend to the community. Unfortunately, health did not allow him to attend CLL Horizons 2021 – he had to cancel his attendance very short notice.

Read more about Neil, his organisation and the impact he has made for patients in New Zealand here.

In 2021, with Helena Hurme we sadly lost another great friend of the community. Helena was the representative at CLLAN´s member Suomen Syöpäpotilaat ry (Association of Cancer Patients in Finland) and a vital link to the group´s CLL patients network. She had attended CLL Horizons conferences in the past and was a great enthusiastic patient advocate. Helena maintained her advocate role as long as she could but at some point was not able to pursue her advocacy role due complications of her Myelodysplastic Syndromes (MDS), and extremely severe Sweet’s Syndrome. Sweet’s Syndrome is a very rare issue but can be devastating to quality of life and prognosis. Helena was wonderfully determined and hopeful the treatments would help. Thanks to her background as a counsellor, she was and would have continued to be, a very helpful and much needed asset to the advocacy community. Her last initiative was an art exhibition in summer 2021.