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.
ASH 2020 CML Conference Report
The 62nd ASH Annual Meeting and Exposition organised by the American Society of Hematology was finally held virtually on December 5-8, 2020, given the coronavirus outbreak situation.
We have prepared a Conference Report in order to provide you the latest updates on the management of chronic myeloid leukemia and the most important highlights presented in this key meeting for the CML community.
Download the ASH 2020 Conference report by clicking on the image below:
In Memoriam of Ahmed Awad
The entire chronic myeloid leukemia community mourns the loss of our dear friend Ahmed Awad from Egypt.
Ahmed was a chronic myeloid leukemia patient himself for many years and founder of our member organisation in Egypt "Power of CML" in June 2014. He was a dedicated patient advocate in his country as well as a strong supporter of the global initiatives of the CML Advocates Network, as co-organizer of the World CML Day events in the Middle East and Africa region in the past years, among others.
In Ahmed owns words, "Once I got diagnosed with CML, I started getting depressed. However, I recognized how to overcome this feeling and how to help other patients to know more about the development of the latest remedy methods."
Our Steering Committee representative of the region, Bahija Gouimi, President of AMAL in Morocco, states: "I lost my best friend. He was a son for me. He was a passionate advocate, always fighting to improve the quality of drugs and patients' lives in Egypt."
We have lost a dear friend and valued dedicated colleague. Our grief and sadness at this time are little compared to what Ahmed’s family must be feeling. Our hearts and prayers go out to them.
Rest in peace, dear Ahmed.
Our CMLCAB Abstract published in the OJRD Supplement
Orphanet Journal of Rare Diseases (OJRD), which is the official journal of Orphanet, the portal for rare diseases and orphan drugs, has recently published a special supplement featuring over 50 selected poster and speaker presentation abstracts from the 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020).
This journal, published by BioMed Central, is an open access online journal focused on rare diseases and orphan products and publishes high-quality reviews on specific topics.
Our Abstract "CML Advocates Network implementation of the Community Advisory Board (CAB) model" has been included as part of this collection as P28 (page 17).
See the OJRD Supplement: 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020). Orphanet J Rare Dis 15, 310 (2020). https://doi.org/10.1186/s13023-020-01550-1
Download the PDF by clicking on the image below:
Welcome, UDON CML Patients Group from Thailand!
We hereby proudly welcome a new member organisation in the CML Advocates Network:
UDON CML Patients Group, based in Thailand.
In Memoriam of Stanislav Kulikov
It is with great sadness that we share that our friend, colleague, and CML patient advocate Stanislav Petrovich Kulikov passed away on 18th December 2020, due to a sudden illness.
CML Advocates Network loses a friend who was also a very active patient advocate, leading the Sodeystvie (Assistance) patient’s organisation as Vice-President in the Volga Federal District and always strongly supporting the network’s initiatives and projects.
Stanislav was a very special, helpful person and a passionate advocate. In words of our colleague Irina from the Patient Foundation "Drop of Blood” in Ukraine, “Stan was the best friend to patients from Ukraine. He was the best fighter for the rights of patients in Russia, broughting good and light to people living with blood cancer in the region. We will always miss him. Thank you, Stan, for all the warmth and kindness.”
He never rested from advocating for leukemia patients and trying to improve diagnosis, access, and quality of life for CML patients in Russia and its neighboring countries. He participated in over ten CML Horizons International Conferences, actively collaborating in many different activities of the global network as the World CML Day or the TFR for CML patient’s research.
“All of us will remember Stan as the happiest friend, who restlessly dedicated his time to improve the quality of our lives and make this world a little bit better with humility and kindness”, Dražen Vincek from Croatia stated.
We owe Stanislav a lot, not only for all that he has done for the CML Advocates Network and for Russian patients but also for being a dear friend and a great advocate. We will miss him very much, and we wish his family and all friends all the strength and wisdom they need in these difficult times. Rest in peace, dear Stanislav.
- The CML Advocates Network Steering Committee on behalf of the CML advocates global community -
ELN Recommendations 2020
The therapeutic landscape of CML has profoundly changed over the past 7 years so the European Leukemia Net convened an expert panel to critically evaluate the current evidence and update its previous recommendations.
The new "European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia" were published in March 2020 in the prestigious journal Leukemia.
In order to improve the information available to patients and support them to access these guidelines, we have developed once more a patient-friendly summary of recommendations for CML management based on the ELN Recommendations 2020.
It is made available at this stage in 15 languages and more are coming. We are welcome to initiate community translations by member organisations of CML Advocates Network under the provision that members have them co-validated by a local CML specialist with whom the member organisation regularly works. If you would like to help us making the summary available in your language, please, contact us at info@cmladvocates.net.
This is a result of a genuinely patient-led project and aims to help patients to better understand CML management and communicate with their doctors on treatment and diagnostics.
Download the Patient-friendly Summary of the ELN 2020 CML Treatment Recommendations
CML Atlas East Europe
CML Atlas East Europe is the final product of East Europe and West Asia regional project run by CML Advocates Network from 1st December 2019 to 31st March 2020.
The activity started with a regional survey reaching our Eastern European patient members addressing a sample of respondents of CML advocates and CML doctors based in 19 countries from the Central and Eastern EU region.
An online questionnaire was created by using cloud-based online survey development software to collect data on general information about CML, availability of TKIs, availability of PCR, running clinical trials and treatment-free remission data.
Results of this collection have been published on a website http://ceeatlas.cmladvocates.net where we can navigate through the menu section and be informed about key topics and issues in the different countries.
ASH 2020 Virtual Conference
Originally to be held in San Diego, California, the 62nd ASH Annual Meeting and Exposition organised by the American Society of Hematology will be presented as an all-virtual event on December 5-8, 2020, given the continuing threat of the COVID-19 pandemic.
This year we will be attending this important meeting for the CML patient advocacy community for an invaluable educational experience and the opportunity to review many scientific abstracts highlighting updates on chronic myeloid leukemia.
We have prepared a selection of the most critical presentations on CML to be followed by the CML patient advocates. Please, note all times listed are in Pacific Time (PST):
