Impressions from Climb for a Cure Mount Kilimanjaro participants

"We have made great progress over the past two decades but we can't sit back and say the job is done when so many CML patients are still not receiving the best drug for them, and so few are achieving treatment-free-remission. With the Climb for a Cure Mount Kilimanjaro 2019 we wanted to do something a bit out of our comfort zone to celebrate 10 years of work by the iCMLf and to mark a new phase ...

"Researchers, patients, patient advocates, physicians and supporters of the Foundation joined us on the Climb for a Cure Mount Kilimanjaro 2019. For me this represents the whole CML community. It's how the community works together and responds together" (Nicola Evans, Chief Executive of the iCMLf)

"I spend my days treating patients with CML and we can treat them sucessfully, but the rest of the world is not like that. We have a bigger obligation to patients in other parts of the world that don't have what we have. I like this focus of the iCMLf" (Kendra Sweet - researcher and hematologist from the US)

"I pledged to do this for me and for all CML patients in Nigeria. CML is not known in Nigeria, the government doesn't know we exist because this is a rare cancer. What I really want to do is to make a change. It might not be possible in a lifetime but at least I will give it a try. It's better than not trying. From there I'll see what happens"(Andy Ojelabi - CML patient from Nigeria)

"The most amazing experience I've ever had, not only about climbing Kilimanjaro, but making this as a group and sharing our experiences" (Katia Pagnano - researcher and hematologist from Brazil)

"The perfect way to meet new friends, discover new places and challenge myself while supporting a noble cause. I would have never dreamed of climbing Mount Kilimanjaro. If I can do this, CML researchers can find a cure for CML" (Rihab Nasr - researcher and hematologist from Lebanon)

"Patients do this mountain climbing every day if they have the diagnosis. I wanted to show my small tribute to their daily struggle" (Vamsi Kota - researcher and hematologist from the US)

Climb for a cure 2019 - Ayla, Conny and Yunus Borowczak

"Thanks to effective medication, CML has changed from a fatal to a chronic disease. This is a great achievement and gives CML patients hope. But this is not enough – more can be done!Our children need a healing therapy! This is our highest priority as a family and we want to reach the top and achieve a cure for CML."(Conny Borowczak with her daugher Ayla and her son Yunus - a CML patient)

The iCMLf Genomics Alliance - Investigating clonal hierarchy in CML

The iCMLf Genomics Alliance is now partnering with the HARMONY Big Data platform to analyse genetic data from thousands of CML patients. A novel iCMLf Genomics Alliance research project, led by Professor Thomas Ernst (University Hospital Jena, Germany) will study the role of genetic aberrations in the disease course of CML.

'A goal of the iCMLf Genomics Alliance is to pool mutatational data through a shared database. This will enhance statistical power in order to understand the impact of genomic variation on treatment response for patients with CML' (Sue Branford – Chair of the iCMLf Genomics Alliance)

The iCMLf is leading the way to bring the CML community together to contribute genomic and clinical data to the HARMONY Plus database and use ‘Big Data’ to answer key questions in CML. The first project aims to elucidate the hierarchy of genomic events that underlie the disease course in CML.

Current status:

11 of our 12 sites have completed data upload
8 sites have been finalised, with upload, transfer and mapping completed
2 sites are finalising mapping with 1 yet to begin
1,147 cases available for analysis with approximately 300 still coming.

We welcome further interest from groups to contribute data, or ideas for future analysis.

We sincerely thank Incyte, Novartis and Pfizer for supporting the outcomes of the iCMLf Genomic Alliance.

The iCMLf TFR Alliance - Optimising Treatment Free Remission

While a cure for CML remains the ultimate goal, treatment free remission (TFR) is often the treatment target for those on TKI therapy. Still, with only around 50% of attempts resulting in sustained TFR, there is much room for improvement.

The iCMLf TFR Alliance brings global researchers together with the aim of ensuring more people with CML can stop therapy and sustain TFR.

In 2022 the iCMLf TFR Alliance partnered with the HARMONY Alliance for a TFR project: Use of big data to identify optimal treatment pathways leading to successful treatment-free remission in CML. The objective of this research project is to effectively evaluate a multitude of factors that may predict and influence a successful TKI discontinuation for patients with CML, allowing for a sustained TFR, which could potentially be linked to long-term cure of the disease.

“By utilising the Harmony Big-Data Platform, and using pooled data from multiple contributors within the International CML Foundation Treatment-Free Remission Alliance, we plan to investigate key components and actions potentially influencing the outcome of TKI discontinuation.” (Torsten Dahlén, Project Lead)

Project status

23 sites from 16 countries are enrolled to participate in the iCMLf/HARMONY TFR project.

Current status:

3 sites are finalised, with upload, transfer and mapping completed
6 sites are finalising mapping & 6 sites are waiting for mapping to begin
4 sites are still transferring data & 4 on hold or just starting the process
1,027 cases available for analysis with approximately 2,800 still coming

We sincerely thank Incyte, Novartis and Pfizer for supporting the outcomes of the iCMLf TFR Alliance.

Mount Kilimanjaro has been climbed. CML can be cured.

IMG 20191104 WA0002 Mount Kilimanjaro has been climbed! In 2019 the iCMLf undertook a unique charity challenge to raise funds for the iCMLf CURE CONSORTIUM The funds raised will play an integral role in getting closer to a cure for CML. An amazing team of 26 climbers – researchers, doctors, patients and supporters from all over the world raised over $300,000 for the work of the Foundation. From 26 October to 3 November the Climb for a cure team sucessfully climbed Mount Kilimanjaro. The youngest climber was 18 years old, a CML patient from Germany.

$304,464 total funds raised by the Climb for a Cure team

26 participants from all over the world including Africa, Australia, Europe, Middle East, South America and USA

Click here to see our Climb for a Cure Mount Kilimanjaro video

Concerted global effort working towards a cure for CML

"There are currently estimated to be over 800,000 CML patients globally. CML is predicted to become the most prevalent leukaemia by 2040 when there are projected to be over 3 million patients worldwide. A concerted global effort working towards a cure is imperative.
The iCMLf is uniquely positioned to drive this effort.”
(Tim Hughes, iCMLf Chairman)

With the increasing prevalence of CML a concerted global effort working towards a cure is imperative. As a global organisation led by clinicians and researchers at the forefront of this disease, the iCMLf is uniquely positioned to do this. The iCMLf is increasingly turning to global priorities through precision medicine approaches aiming to improve outcomes for patients with CML.

The iCMLf will drive this effort by bringing interested parties together on specific projects under the banner of 'cure'. The Foundation has formed a CURE CONSORTIUM to focus our efforts working towards a cure for CML. Specifically, we plan to build multicentre global research collaborations to accelerate the development of more effective and safer treatment strategies with the view that these will lead to a cure.

Developing a genome-based risk-calculator for newly diagnosed CML patients

The iCMLf has formed a Genomics Alliance to develop a genome-based risk calculator for newly diagnosed CML patients. The Alliance aims to harness the wealth of genomic information that is generated in local CML research projects by building a platform to facilitate data assimilation and sample exchanges. Combining many data sets and facilitating global collaborative studies will enable us to develop a baseline predictor of adverse outcomes.

Maximising achievement of TFR while minimising failed TFR attempts and other negative outcomes

The iCMLf also formed a second Alliance under the banner of CURE - the iCMLf Treatment-Free-Remission (TFR) Alliance. The mission of the iCMLf TFR Alliance is to maximise achievement of TFR while minimising failed TFR attempts and other negative outcomes.

Six month update

After six months, as we reflect on the journey we embarked on together last November during the iCMLf Climb for a Cure: Annapurna, we're still filled with gratitude for your unwavering support and donations of over $200,000!

Nicola Evans, iCMLf Chief Executive, said, "We are so grateful for the support we received from all over the world. Every day was a tough challenge, but we really felt the support of the iCMLf community along the way. Your support is the backbone of our mission to make a difference in the lives of people with CML."

Read on to find out what we've been up to since the Climb.

The Climb for a Cure Corporate sponsors

Just like on the mountain we would not have been so successful without a strong team. We are very grateful for all the support we received in the past year – from all our climbers who worked so hard to raise funds and to prepare for the climb and from every single person who supported us with their donations - among them an anonymous donation of $ 100,000.

We acknowledge all of our corporate sponsors for their generous support:

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Registered Address: International CML Foundation - 20 Eversley Road - Bexhill-On-Sea, East Sussex, TN40 1HE - UK