World CML Day Blog

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World CML Day

Blog on World CML Day

World CML Day is aptly celebrated on September 22 because if it had not been for the fun Chromosome No 22 and 9 were having (at our expense), we would not be talking CML. But with Glivec and joint effort of Novartis and Max foundation the joke is on them. The reason why I am saying this is because Glivec, and the patient access programmes GIPAP and NOA have turned a potentially life threatening disease into a well managed chronic condition. On World CML Day I am proud to report that we may not be the most common but the most prevalent cancer in the world. What this really means is that more and more people are living with CML in India than anywhere else in the world. I would like to attribute this success to the tireless efforts of The Max Foundation, the support group they set up - Friends of Max, Novartis and our families. To me World CML Day is to honour the machinery of two organisations – Novartis and The Max Foundation with Friends of Max, my doctors, fellow CMLers and our families. We together ensure that each of us, lives a long fulfilling and good quality life.   Yesterday, we commemorated the World CML Day in Mumbai.  The reporting time was 4.30 PM at the Max India office and as usual yours truly walked in an hour late at 5.30 (some things never change). I first entered Amma’s (As we all call Viji Venkatesh of MAX) office and found her talking on the phone trying to solve a problem of one our members. She greeted me and said “Sukanya I will hug you after I finish this issue”. This is Amma and MAX for you, always on their toes ensuring that this programme works seamlessly for us. I also met the Novartis team members Pankaj, Svetlana and Liana and truly it was nice to meet the people behind this programme. Fellow CMLers Anupriya Tripathi along with her friend Saloni and Paresh Ji, Suresh and FOM Volunteer Appa, were also present in the office. The programme was to release orange colours balloons over the Arabian Sea. Orange being the colour of Glivec and Leukaemia as explained by Amma. I think this was the best way to mark our day as we are all living a fulfilling and uninhibited life with CML. Before, releasing the balloons, Amma made a short speech and informed us that ours is the most prevalent kind of leukaemia in India. This was followed by a scrumptious treat of Samosas and a beautiful custom made cake with blue and green icing with the CML Day logo that said September 22, World CML Day. I will let you all in on a secret 12 years ago when I was undergoing intensive chemo therapy I had once mentioned to my mother “someday after I have spent at least 10  years I will release balloons in the sky to mark my success”. In 2001 when I had been diagnosed Glivec was still being tested and Bone Marrow Transplant was the only cure but not everybody had the best match. The average life span considered at that time was 5 years and 10 years if you were lucky. Although, I was hopeful I would get cured after BMT, we were not 100% sure (later, I found out it was not meant to be!).  So, who would have thought that after 12 years I would be actually releasing balloons in the sky to mark World CML Day and that too with such fanfare!!Thank You Novartis, MAX and Friends of Max for making it happen J Friends of Max Volunteer India  

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In Germany, we are also preparing for World CML Day 2013!

On 21-22 September 2013, my association LeukaNET/Leukaemie-Online will launch a "CML photo book of hope" under the title "A little treat", highlighting the personal stories, hopes and fears of 12 CML patients in Germany. We are pretty excited! Bert, a professional photographer and also CML patients, is currently touring Germany to spend a day with CML patients that have been at our annual meetings in previous years and that have a story to tell - to provide other CML patients with hope. I think it is coming out great... we are pretty excited to have it in our hands some days before 9/22!

We will also hold a two-day meeting with Prof Hochhaus, a CML expert, who will provide newest updates from CML research, and will answer questions that participants will surely have!

What will you be doing on World CML Day? I am so curious!

Best wishes,
Jan

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On behalf of The Max Foundation and the Friends of Max I am happy to share our contribution to World CML Day 2013 with all through the CML Advocates website and the Blog . A big thanks to the team at CML Advocates who have inspired and encouraged us to take our activities to greater heights   On Sunday , 22nd September World CML Day dawned bright and clear in two cities in India , on two opposite sides of our vast land . Jodhpur , in the West , in the heart of Rajasthan , the Abode of Kings and by the side of the vast Thar desert where the sun sets on the stark landscape in a burst of glory each day  . And Kolkata , right across the country , the capital of Bengal , that abode of art and culture where the mighty Ganges flows into the Bay of Bengal all the way from the mighty Himalayas and from where the sun rises each morning kissing the country with its searing rays .   Everything in these two states is as different as chalk form cheese ; be it the language , the food , the terrain or the clothes worn by the people who belong to these great regions. Yet , we are bound together by bonds at once even too difficult to describe . As I write this report I think to myself our 2013 logo , “ all united , all unique” cannot be more apt.   If being an Indian and above all being a good human being unites us and transcends all barriers , then on that morning , there was something else in common that was bringing more than 350 people together at the two far boundaries of this country . CML .   Yes , in Jodhpur and in Kolkata , that morning families touched by CML were trooping in to attend the special meeting arranged solely for their benefit .   The Max Foundation India team is honoured that the physician community in India reached out to us and  entrusted  the responsibility of organising an event that would commemorate this day and enable the CML community to come together and celebrate life . We call it Maximise Life and that is exactly what happened.   With Dr Hemant Malhotra in Jodhpur and Dr Reena Nair in Kolkata offering us all the support we needed , it was a matter of a couple of weeks before we reached out to everyone in the region and invited them to join us for a day of education , awareness and entertainment .  Friends of Max in both cities , a large established group in Kolkata and a fledgling one in Jodhpur got their act together and before you could say Philadelphia Chromosome , the most exciting programmes were chalked out .   Where in Jodhpur we had the 100 strong audience listening with rapt attention to testimonials of champions who have weathered the diagnosis of CML for over a decade and those who found love and happiness even in the midst of the trauma it brought on , In Kolkata , more than 220 participants cheered and clapped lustily as the curtains fell on the One Act play that took everyone through the family of Navin and Stuti as they coped with the diagnosis in their own family , involved their children in its understanding and contributing to their father’s good adherence practices, to aware and alert oncologists recommending accepted monitoring via PCR ; to employers who supported their team members notwithstanding the stigma still attached to cancer and to the strong presence and support of friends and families who formed support groups to embrace newly diagnosed patients into their fold .   In both the meetings we had the best of the medical fraternity from the region sharing their expertise and patiently answering all the queries asked by the audience . Where in Kolkata we had Dr Mammen Chandy explaining the relevance of 9/22 in CML , in Jodhpur we had Dr Hemant Malhotra and Dr Tulika Seth hold forth on the importance of compliance and adherence .   Two expert panels in Kolkata further took up various issues that patients on long term therapy face and the discussions that ensued managed to involve everyone present .   No meeting in India is complete without music and food and it was a happy group that went back to their home and hearth after a day of camaraderie and CML sharings     Viji Venkatesh Country Head , India

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With this new World CML Day 2013 Blog, moderated by the "World CML Day 2013 Working Group", we provide you the opportunity to share your ideas and experience with other CML patient organizations all over the world!

We look forward to your active participation!

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