CML Advocates Network Steering Committee 2021
We are excited to formally welcome and introduce the three new members of the CML Advocates Network Steering Committee 2021:
- Zack Pemberton-Whiteley, Chief Executive Officer of Leukaemia Care, United Kingdom. Region Western Europe Representative.
- Eunice Orekha, President of Max Care Foundation, Nigeria. Region Middle East & Africa Representative.
- Felipe Tapia, Vice President of Maxi Vida Association, Chile. Region Latin America Representative.
In Memoriam Professor Michele Baccarani
We have learnt with deep sadness the passing away of Professor Michele Baccarani on 20th December 2021.
Dr. Baccarani was an outstanding renowned doctor, a great scientist, an excellent hematologist and one of the most important leaders on chronic myeloid leukemia worldwide.
He dedicated his life to research against leukemia, making a significant contribution to change the natural history of this disease and impact on the quality of life of patients.
The CML Advocates Network on behalf of the global CML patients community all around the world, are profoundly grateful to him for his remarkable work on the benefit of CML patients, moreover for the support provided to the birth of our member organisation, AIL Group of CML patients in Italy.
It was a privilege and an honour for us to know him and learn from him.
We wish his family, friends and colleagues all the strength and wisdom they need in these difficult times.
Rest in peace.
In Memoriam of Euzebiusz Jan Dziwiński
To the memory of our dearly departed friend. We will miss you with all our hearts. We may have lost you but your spirit lives on long after you’re gone.
It is with deep sadness that we inform the CML community about the passing of our friend, colleague, and CML patient advocate Euzebiusz Jan Dziwiński on 5th December 2021, at the age of 71.
CML Advocates Network loses a close friend who was also a very active patient advocate and member of the CML family from the outset of the global network.
In Memoriam of Trevor Steyn
It is with great sadness that we share that our friend, colleague, and CML patient advocate Trevor Steyn passed away on 9th November 2021 at the age of 63.
CML Advocates Network loses a friend, a CML patient for over 32 years and also a very active patient advocate, leading the CML patient organisation CML SA founded in 2013 to offer up-to-date information, emotional support and advocacy on behalf of all CML patients in South Africa.
Trevor was a very smart person, someone who was very outspoken at our network meetings with very well reflected questions, and such a wonderful and caring individual. In words of our colleague Bahija Gouimi from AMAL, Morocco, “We lost a devoted leader and a great friend. I will really miss you calling me my dear Sister. Know that you're unforgettable. I will really miss you. I send my prayers and support to Delphine, your amazing wife and your family during this difficult time.”
CML Horizons 2021 Virtual Conference Information
CML Horizons 2020: Learn. Share. Grow.
22 – 24 October 2021, Virtual Conference
CML Advocates Network (CML AN) initially planned to hold the 19th International CML Horizons 2021 as a Hybrid event from 22nd to 24th October of 2021 in Netanya, Israel, however, in light of the ever-evolving and unpredictability of COVID-19 and the various variants that are now posing a health risk globally, the Steering Committee decided to move to a fully virtual event for 2021 and keeping the same dates.
2021 CML Horizons virtual event attracted high interest with close to 300 registrations from 74 countries from all corners of the world. The 19th Conference Programme consisted of 3 half days with 150 daily participants and from the daily feedback we were receiving from our members it showed that once again this virtual event was immensely successful.
Watch videos of all sessions on demand
ASH 2021 Annual Meeting
The 63rd ASH Annual Meeting and Exposition organised by the American Society of Hematology will be presented at the Georgia World Congress Center in Atlanta, Georgia – and virtually – from December 11-14, 2021.
This year we will be attending this important meeting for the CML patient advocacy community to discover the newest advances in hematology, review many scientific abstracts highlighting updates on chronic myeloid leukemia and prepare a comprehensive report of of the most critical presentations on CML.
Read more about the agenda to be followed by the CML patient advocates. Please, note all times listed are in US Eastern Time (EST):
CML Horizons 2021: Call for Registration
Register here - Draft Agenda - Call for Posters - Call for Nominations - Call for Abstracts - Acknowledgements
Join us for the 19th “CML Horizons: Learn. Share. Grow" Conference
DATE: 22 - 24 October 2021
LOCATION: Virtual
Taking place during the Time Zone of Central European Time (CET).
- Virtual Event -
The CML Horizons conference is dedicated to the development of our members as patient advocates and in light of the ever evolving and unpredictability of COVID-19 and the various variants that are now posing a health risk globally, the Steering Committee has decided to move to a fully virtual event for 2021.
Please register for the 19th CML Horizons: Learn. Share. Grow" Conference by clicking here:
EHA 2021 Congress: CML highlights
EHA2021 VIRTUAL: 26th EHA Annual Congress
Only two weeks left to start the European Hematology Association Congress 2021 from June 9 to 17 and get informed about the highlight state-of-the-art clinical practice, recent advances, new data and views from different stakeholders as well as international organizations.
Once again, we will be attending this key meeting for the CML patient advocacy community that will be held online due to the impact of COVID-19 for the second time in its history, and sharing with you the information on our social media channels and website.
This is an excellent opportunity to explore the newest developments in CML and beyond and new evidence-based approaches to diagnosis and treatment. Moreover, this year the European Hematology Association is introducing several new session types at #EHA2021 as on-demand Guidelines Sessions or live Thematic Debates.
Check out the CML featured sessions we have summarized for you:
In Memoriam of Minella López
It is with great sadness that we share the loss of another friend and CML patient advocate Minella López, President of FUNDALMC, the patient organisation supporting CML patients in Venezuela. She passed away on 4th April 2021, due to COVID19 infection.
Minella was a fighter, passionate person, and a lover of structured things who made enormous efforts on behalf of the CML patient community in Venezuela, reaching the scope that FUNDALMC has today.
She always received full support of her colleagues within the Foundation, aligning the advocacy work with the CML patient needs for better access to medicines and health care in her country.
One of the most important milestones Minella achieved with the support of the CML advocates was the establishment of a legal, solid and well-structured patient organisation in Venezuela so that no CML patient is left behind.
"Mother hen, Minella was a beautiful, good-hearted, perfectionist, persevering, kind, and compassionate woman. She has left us too soon but her sense of commitment to the patient needs and advocacy work will inspire us to drive high-level projects on her behalf to keep on supporting CML patients in Venezuela. We will do our best to push forward to ensure her dreams, esteem vision, and memory continue", as FUNDALMC Board and many patients stated.
We wish Minella's family and all friends all the strength and courage they need in these difficult times.
May there be comfort in knowing that someone so special will never be forgotten.
Rest in peace, dear Minella.
Welcome, Fundación Bekämpa, Ecuador!
We hereby proudly welcome a new member organisation in the CML Advocates Network:
Big Data and Chronic Myeloid Leukemia
How Big Data and large data sets are helping to ask and answer previously unknown questions and answers in research on hematological diseases.
by Jan Geißler, co-founder of the CML Advocates Network
Big Data – the term has been a topic of controversial debate for several years.
Why, despite all the criticism, should we gather and analyze big amounts of data? Why does it hold great potential for health research?
How does the HARMONY project launched by the EU’s Innovative Medicines Initiative make use of Big Data, and to what extent do patient organizations have a central role to play in this?
And what role does it play in CML?
In Memoriam of Jacek Gugulski
It is with regret and sadness to hear of our recent loss of our dear friend Jacek Gugulski, who passed away on the 6th of February at the age of 52 years after long time of struggling with cancer. A service is being held on Thursday, February 11th at 13:00 in Chęcinach, St. Bartholomew Church.
Jacek was the long-time President and Co-founder of our member in Poland, the Polish Nationwide Association of CML Patients and the Polish Cancer Patient Coalition.
He was a friendly and charismatic person, a very respected patient advocate. In his activities for the benefit of haematological patients, he showed great empathy and commitment. He initiated many meetings and actions promoting cancer treatment for patients throughout Poland. He engaged heavily to ensure that haematological patients in Poland had access to effective drugs and therapies.
In our Co-founder Jan Geissler words, "I have known Jacek since 2004. He was diagnosed with CML in 1991. He co-founded "Stowarzyszenie PBS" in 2004 and from that moment was very active to advocate on behalf of cancer patients on the national and international level.
In 2004, he was at our European Cancer Patient Coalition Summit of Cancer Patients Advocacy Groups in Central and Eastern Europe held in Warsaw under the hospices of the Polish First Lady Jolanta Kwaśniewska.
In 2005, the year we decided to set up the CML Advocates Network, a number of CML patient organisations did one of their first joint advocacy activities by sending letters from all parts of the world to appeal to the Polish government to reconsider their position on putting Glivec on the list of reimbursed medicines in Poland, which, thanks to Jacek, was successful.
He attended many European Cancer Patient Coalition meetings, as the Masterclass in 2009, and a countless number of CML Horizons conferences over the past decade. We will miss Jacek a lot!"
On behalf of the global CML patient advocacy community, we extend our heartfelt sympathy to his wife Monica, and his two sons Bartek and Cuba and also to the whole family and friends. We wish them peace to bring comfort and courage to face the difficult days ahead.
Rest in peace, dear Jacek.
