Exciting initiatives of CML patient organisations and professionals are held on World CML Day to create awareness about the needs of patients affected by Chronic Myeloid Leukemia and their families. Read here what the groups are doing around 22 September 2014!
World CML Day Activities 2014
Germany: For this year´s World CML Day members of German Leukämie-Online will meet in Berlin (Sept 20-21). Two exciting days of fun and learning lie ahead of us! On Sept 20, we are pleased to welcome Prof. Woermann of the German Society of Hematology and Oncology who will give a lecture on guidelines and quality assurance in the care of leukemia patients. In the evening we will all move to the theatre at Berlin´s “Umspannwerk Ost” to enjoy an evening full of laughter with German comedian André Hartmann who will delight the audience with a comical performance following this year´s motto: “Laughing – Quite an act sometimes”, a continuation of our previous motto “CML – Quite an act sometimes”. We all know those moments when reality finally catches up with us and when it seems difficult if not impossible to laugh heartily, but we also know that there is always a silver lining, and André Hartmann will for sure put our stomach muscles to test. On Sunday we will be offering interesting medical lectures focusing on clinical trials, therapetic options and new methods of diagnosis. Lectures will be given by our highly valued friend Prof. Andreas Hochaus. We are expecting about 120 patients and relatives from all over Germany, Switzerland and Austria!
Egypt: Our new member “Can Survive” from Egypt is planning the following exciting event: Mr & Mrs CanSurvive will feature two important members of our organization. Mr. Ahmed; a CML patient & Mrs. Nabila; a Breast Cancer Survivor. Both of them have a real life story of how they capitalized on the event of being diagnosed of cancer & getting the best out of it. Both of them dedicate most of their time speaking with new patients & motivating them to live good life. Both of them will will write their positive cancer story to be printed in a small booklet under the name Mr & Mrs Maximo. We will invite 200 caregiver, cancer survivor & cancer patients to the event. Greek Campus in tahrir square is an open area theatre surrounded by a splendid garden. 50 of the care giver will have a cycling tour for 6 kilos around the theatre with branded bikes for Mr & Mrs CanSurvive. They will distribute the story to people in the streets, then they will join the attendants in the theatre to start the event. A public figure will interview Mr. Ahmed & Mrs. Nabila to tell their story in an entertaining way. Then after they finish public will watch on big screen a short movie featuring the life of Mr. Ahmed & Mrs. Nabila & how they conquer cancer. Then the care givers will go another 6 kilos tour with the bikes to give people CDs with the movie.
Israel: The Israeli CML patients support and info organization will hold 6 patients meetings in 6 hospitals all over the country, from Beer Sheva in the South, through Jerusalem, Tel Aviv, Haifa and Afula in the north. Each meeting has a different program all centered around CML management and also the added value of a patient organization to the individual patient. They hope to distribute at these meetings the new patients friendly ELN guideline in Hebrew. Couple of weeks later the organization will hold again the CML awareness bike ride in Tel Aviv with a group of patients and caregivers riding together to raise awareness to CML and send out the message of hope that Cancer is not a death verdict.
Cameroon: AMACAS-LMC from Cameroon is also having a series of interesting activities in the context of World CML Day. Detailed information will be provided very soon!
China: As a celebration of the World CML Day the New Sunshine Charity Foundation will hold a national-wide CML conference on Sep. 21 in Beijing, including sharing of foreign patient advocates organizations, lectures on updates of treatment for CML, a forum on medical insurance policy and sharing of best practices from patients around China.
USA: The Leukemia & Lymphoma Society (California Southland Chapter) CML Support Group fundraises for the LLS by walking the Light the Night Walk at Angel Stadium (baseball). We call ourselves the CML Busters. This year we will sport our World CML Day pins while we do this inspiring walk in September and raise awareness of the challenges and triumphs that CML survivors deal with on a daily basis. We will light up the night with our survivorship! Further information can be found here: http://pages.lightthenight.org/calso/OrangeCo14/virginiagarner.
France: On 22 September 2014, LMC France will launch several activities throughout France: several new videos, a new version of the book “What is my PCR”, briefcase “life Journey” containing a “CML Log Book” and a “Guide for Caregivers”, e-health’s tool “LMCoach” : service of messages by SMS to help good compliance. On 27 September, LMC France organizes its first conference on CML including: Roundtable with exchange of views among CML-experts (Pr. Mahon, Dr. Charbonnier, Pr. Auberger, Pr. Costello, Pr. Michallet, Dr. Hoarau, Dr. Mozziconacci, Dr. Rea, Dr.Nicolini, Y. Arnault ) and “Great Witnesses ” patients /An associative village dedicated to “everyday life”: self-image, physio, credit, insurance etc … /Exhibition: Inserm ((National Institute of Health and Medical Research) and 50 years of medical research. And many more surprises! All articles on World CML Day in France have been complied here: http://www.lmc-france.fr/journ%C3%A9e-mondiale-lmc-1/journ%C3%A9e-mondiale-lmc-2014/la-presse-en-parle/
Morocco: For this year´s World CML Day AMAL Morocco will organize a three days trip (19-21 sept 2014) to Toubkal Mmountain (4165 m) with patients, parents, physicians, nurses, volunteers and journalists in order to inform, discuss, create awareness about the disease, about fundraising and monitoring-issues (PCR campaign). The main objective of this trip is to encourage patients to be active advocates by collaborating, participating and sharing their stories. Cancer is a mountain and we fight every day – because… HOPE CAN MOVE MOUNTAINS! Our activity will help strengthening patients´ connection with nature and overcome stress and stigma about cancer in Morocco.
Turkey: The association Genç Birikim Derğeni (Youth Accumulation Association) – though not a member of the CML Advocates Network – will join World CML Day 2014. Genç Birikim Derğeni is a NGO that works with cancer and health issues. Their aim is to protect young people and defend the rights of cancer patients. From 14-22 September they will have a training course with youth and also an International seminar called “Oncology days ” where they will receive important people for health field and also welcome the public to discuss the cancer problematics of our days. Interactive activities will be held on the occasion of World CML Day (among these is an awareness-walk through the main street of Muş with 200 members from the association), and finally they plan to promote this important day using social media and other tools.
Colombia: This year at Fundación Colombiana de Leucemia y Linfoma – FCL we will commemorate the World CML Day in the cities of Medellín, Barranquilla, Bogotá and Cali on the 6th, 20th, 27th of September and 4th of October respectively. In these cities we are going to have hematologist and activists educating patients and their families about CML, its monitoring and about the current health care system and patients’ rights. We are also promoting the CML patients’ declaration on quality and consistency in use of generics in Spanish and inviting patients, family members and carers to support this declaration by signing it, as we are planning to enforce more strict regulation on the generics that come to the country to treat CML. During this day we will hang out World CML Day magnetic pins to all attendees, will raffle the 10 books “FACES OF COURAGE AND HOPE” and the patients will receive a plant with the word felicidad (=happiness)and the foundations logo carved in the seed coat. This day will end with a great Colombian storytellers who’s stories will inspire happiness and above all, life.
Australia: In Australia, World CML Day activities will be marked by the launch of the Leukaemia Foundation’s Understanding CML DVD. Dr David Ross, a haematologist with expertise in CML, is featured on the DVD along with Lisa Carne, a specialist CML support nurse, and there are two stories from Jill and Tina who share their experiences of living with CML. The Leukaemia Foundation will host World CML Day events, featuring guest speakers, and CML support groups across Australia, and has developed a World CML Day awareness poster to generate awareness of this rare blood cancer within the general community. The poster will be displayed at hospitals, community centres and GP practices and is available for people with CML to use to create awareness within their own communities. As well, the World CML Day pins will be distributed throughout each state and territory and the Leukaemia Foundation has its own CML Awareness ribbons, and an article on World CML Day is featured in the Foundation’s latest issue of CML News.
China: On Sep 22, Shanghai Roots & Shoots will hold a CML patient meeting. In the morning, President of Shanghai Cancer Recovery Club, Mr. Yuan Zhengping will give a speech on his experiences of fighting cancer. Then, Mr. Yan Zhengwei, the counseling specialist will organize warm-up activities, to promote interaction between patients. In the afternoon, we will invite CML experts from Shanghai Ruijin Hospital to join the Q&A session, so our patients could seek medical advice from the experts.
India: On Sept 22, the Global Hospital, Ludhiana, Punjab / India, will organize a meeting led by Dr. Navdeep Singh regarding the potential curability of CML. In the meeting, organizing doctors will focus on: 1. CML is a potentially curable disease, 2. CML is curable with a single pill every day, 3. a pill a day will keep CML away, 4. rain or shine, you will be fine, 5. don’t miss the dose, 6. keep a check on your CML by PCR, 7. PCR means Polymerase Chain Reaction for BCR-ABL (or “Police Control Room for controlling CML” J…), 8. God bless CML patients.
Turkey: On September 22nd, 2014, Dance With Cancer, Kanserle Dans Society, will be performing “Horon Dance” in Istanbul. “Horon Dance” is a group of folk dances from the Black Sea region of Turkey. CML patients will be spending the day dancing away to raise awareness about CML. Our CML photo frame will make this day memorable. We will have many surprises and are anxious to spend the day with you all! Greetings from Turkey!
Argentina: September 22 is World CML Day, a date that ALMA – Asociación Leucemia Mieloide Argentina (Myeloid Leukemia Association of Argentina), will commemorate with the aim to raise the profile of this disease and raise awareness in society about the same. 9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukemia. To commemorate this day, ALMA – Argentina Myeloid Leukemia Association will organize a BLOOD DONOR DAY and invite the public to JOIN THE BONE MARROW REGISTRY. The date is Monday 22 September from 9:00 AM to 4:00 PM.at Diagonal Norte and Libertad.
India: The Max Foundation in India is planning special CML Support Group Meetings to commemorate World CML Day this year in two major cities, Bengaluru and Chennai. Working closely with our patient support group arm in India, Friends of Max, the week of 22/9 will see CML survivors and their caregivers in these two cities come together and spend the whole day sharing and learning from each other. In Bengaluru, the event is being held on the 21st of September at the Auditorium of the HCG Hospitals (Magadi Main Road, Basaveshwaranagar, Bengaluru, Karnataka 560079) with support from Dr Shekhar Patil and his team of dedicated oncologists. In Chennai, a daylong meeting is planned at the Adayar Cancer Institute (18, East Canal Bank Road, Adayar, Chennai, Tamil Nadu 600020) on the 28th with support from Dr Rejiv Rajendranath and his team. The highlight of both these meetings is the effort to bring as many CML survivors and their caregivers in the region as possible under the shelter of Friends of Max, and provide them with the all-important platform to share and learn from each other. Our emphasis this year is on Compliance and the fostering of good adherence behaviour in long term survivors. Innovative tools of intervention are Drama Therapy workshops and Panel Discussions with patients who have been on therapy for over a dozen years and their treating physicians. In The Max Office in Bombay, on the 22nd we are planning an Open House where all our partners and peers along with our patients and their families will come together to listen to a reading of the experiences shared in the book, Faces of Courage and Hope that you are bringing out. We will all then release, in a gesture of Hope and Courage, Orange Balloons into the Arabian Sea which hugs our coastline here in Central Bombay.
Colombia: The Esperanza Viva Foundation in Colombia has created the campaign “Thumbs up” 100% quality treatments. Our goal is to become aware of the importance of getting quality treatments; we will be socializing on social networks like Facebook, Twitter, Blog, Instagram. All the people and organizations that wish to send us their pictures, please, send them to email@example.com. We’ll be getting them from August 22 to September 22. We’ll be delivering the Serbian Declaration to the Health Ministry and we’ll be asking their support on pharmacovigilance of generic drugs sold in this country. We’ll be doing some interviews for different media, like television, newspapers and radio, where we’ll be socializing on the World Day of CML and the importance of quality treatments. We’ll be starting a conference cycle on quality medicines in Bucaramanga, Barranquilla, Cartagena, Armenia, Manizales, Pereira, Cúcuta and Medellín. On September 22 we’ll be celebrating a picnic day with Bucaramanga’s patients, medical advisers and rights activists.
Slovenia: The Slovenian lymphoma and leukemia patient association, L&L is preparing a Patient & family day, dedicated to World CML day 22/9 and to World Lymphoma day 15/9, and also other blood diseases (we make one common event this autumn, to be effective, since we are a small country). The event will be held on 9/10 in capital city Ljubljana, we invite patients, families and medical experts from all around Slovenia. There will be a whole day programme: 1. haematologists will give lectures about news in treatment of chronic and acute leukemia and lymphoma, 2. a psychotherapist and psychiatrist will talk about overcoming mental problems at disease, 3. and will lead short relaxation exercises together with participants, 4. after lunch will be three counselling corners with doctors: a) chronic leukemia, b) acute leukemia, c) lymphoma, 5. at the end we will present the Patient association continual activities for helping patients.We appear with CML awareness messages on 22/9 2014, on Slovenian national television and national radio broadcast.
Czech Republic: The Czech CML community at large will be a target of an awareness of the 9/22 initiative for the first time. We see the CML World Day as an opportunity to highlight the need of an expert care which, in the Czech healthcare environment is feasible by centralization of CML treatment into specialized hospitals. The Institute of Hematology and Transfusion in Prague will become a case study in a video-clip. President of the Czech Society of Hematology will provide an introduction by an overview of the centralized approach to cancer care in the Czech Republic, followed by a CML expert presentation on current CML treatments and a summary of CML treatment data in the Czech Republic, including clinical trials focused at treatment cessation. A CML-patient story of 18 years ongoing treatment, given by an elderly lady shining with energy – is an optimistic illustration to the medical lecture.
Russian Federation: On International CML Day 2014 All-Russian Oncohematology Society “Sodeystvie” has planned a number of interesting events which are going to be held in different regions of the country: 1. Concerts and festivities for the CML patients organized by the volunteers and patients with CML; 2. Planting trees in the parks of the Russian cities, as it happened in Moscow last year; 3. Giving children’s books to young patients “Anna, You’ll overcome Everything” and “Young Heroes”; 4. Presentation of grateful letters; 5. Illuminating of International CML Day by media. All photos and video materials of World CML Day in Russian Federation will be available on our site here: www.sodeystvie-cml.ru.
Finland: On Saturday we have a seminar for patients. We will have a hematologist (Perttu Koskenvesa, one of the best known in Finland) to tell about “what’s new in CML-treatment”. We’ll have also a peer support session. Family members will have a session just for themselves, too. For the actual day we have made media release. We try to get it published in as many media as possible including TV. We have offered also some patients to be interviewed. A media company is helping us with all of the work.
Nigeria: For this year’s World CML day, Maxcare Foundation Nigeria will organize a sensitization workshop/seminar for members and caregivers. The seminar will feature presentations covering: CML, Treatment and Management options and Adherence to Therapy by 3 Consultant Haematologists from the GIPAP centre in Nigeria. It is expected to generate awareness on the disease and eliminate potential fears that patient have on lifelong treatment. We also expect to have peer support session afterwards to allow for more interactions especially for new patients. Some of the materials sent by the CML advocates network such as the book on Faces of Courage and Hope will be used as inspirational materials for patients. Photos will be made available for posting on the cml advocates website. We intend to hold this programme on Thursday 18th September 2014 at the GIPAP centre since it’s central and many patients can get there. Wish us luck…
Italy: Gruppo AIL Pazienti LMC – Italian CML Patients Group, will organize a web activity, called “Tree of hope”, to celebrate the WORLD CML DAY 2014. From 15th to 27th of September the patients and their relatives are invited to hang on the “Tree of Hope” the evidence of their experiences of living with CML. A virtual tree on which it is possible to share they own thoughts, celebrate successes in the fight against the disease and share the hopes for a future cure. The tree is therefore more opportunity to give voice to patients and their families, to share their hopes and fears to fight together. You can find the link to the dedicate page of “Tree of Hope” on home page of the website of the Italian Patient’ Group: http://www.lmconline.it. All message posted will be collect in a publication.
Thailand: Thai CML Patient Group (Thai CML PAG) plans to celebrate World CML Awareness day 2014 by organizing the enjoyable and healthy activity called “The Ride for CML”. The event will be held on Sept 21 (one day prior to CML Awareness Day) at “Suan Rot Fai” Park which is located in the heart of Bangkok. The bicycle ride starts at 9:22 am, after the ride there will be CML booth with staffs to educate people about the disease and as well as the medication. Moreover, on the 3rd of September, Thai CML PAG had already made media release to support the announcement from the National Health Security Office (NHSO) earlier that all Thai CML patients will be able to access both Nilotinib and Dasatinib as second line and third line treatment soon and urged the Social Security Office to implement this accessibility to all patients in Social Security Scheme (SSS) as well. The concept of Thai CML PAG is ” No Thai CML patients left behind”. Thai CML PAG also made media release about the upcoming CML Awareness Day event.
Malaysia: The Max Family in Malaysia and The Max Foundation have initiated a social media campaign known as “CML: What Would You Say” (besides Chronic Myeloid Leukemia)? Everybody is invited to write his/her CML words in a cardboard or paper, take a picture of him-/herself holding the cardboard and submit the picture. The pictures will be posted on Max Family Facebook throughout the campaign. There will be a prize for the photo with most Likes. Note: this campaign is not limited to the CML community in Malaysia. Everybody can participate – so go and send your picture! Let’s raise awareness about CML!
USA: On the occasion of World CML Day, the Leukemia & Lymphoma Society, LLS has launched a new video entitled Chronic Myeloid Leukemia (CML): The Role of PCR Testing. The video focuses on the role of PCR testing and ongoing monitoring for CML survivors. Paul, a CML survivor and Alison W. Loren, MD, MS, FACP of Abramson Cancer Center, Perelman School of Medicine of the University of Pennsylvania share important information. The video can be accessed on LLS´s website: http://www.lls.org/#/resourcecenter/videos/.
USA: During the weekend the National CML Society is hosting a patient program on Treatment Free Remission in collaboration with the Arizona LLS Chapter and holding local CML Connection support meetings in several states. On Monday, 9/22, NCMLS will unveil Team 922, a group of individuals running to bring greater national awareness to CML and to raise funds for NCMLS programs. The team, made up of CML friends, supporters, researchers and physicians, will be in the New York City Marathon on November 2.
Russia: On World CML Day 9/22 Russian web-forum of CML patients CML-Stop is planning the following: 1. to give away magnetic pins among the patients; 2. to present the book „Faces of courage and hope“ on our web site; 3. to publish the article on World CML Day on our site and sites of our partners. The article on history of World CML Day, success and challenges we faced in Russia, Ukraine and Tadjikistan; 4. to translate, adapt and publish news from CML Advocates Network on World CML Day.
Guatemala: On September the 9th, a live television interview was broadcasted about World CML Day, where 45 people contacted ASOPALEU in regards to their services provided by the Association. Six of the cases were reviewed immediately and then each were referred to different health care centers, which specialize in the treatment of Leukemia. On Saturday, September 20th, ASOPALEU started its activities for CML CML Day, with the program “sembrando la semilla de la esperanza” in which the patients with leukemia and their families were provided information, emotional support and education about CML. The 9/22 was held by a strong group of patients, their families and volunteers who were eager to obtain information and knowledge which would teach them how to improve their quality of life. The program was developed by professionals who presented scientific topics and practical advice which would help to improve the mental and physical health of patients, as well as improve communication within the family. The presentations that were offered included, Spirituality, Direct connection with God, Hematology and Oncology: Advances in Chronic Myeloid Leukemia, CML in Children and Adolescents, Myths and Realities of CML, What is my PCR in International Scale (IS)?, Psychological Reaction and Adaptation to Diagnosis of Cancer; Palliative Care and Caring for the Caregiver, Laughter Therapy: The Art of Being Happy, Testimony of a Voluntary Messenger of Hope. Relevant quotes to consider: “Thank God for every moment, every instant, every day, because you have to learn to live for today, since tomorrow does not exist and yesterday is already gone”, “Be happy, do not be discouraged, learn how to love and live”, “God gives us the free will to choose whether we want to live our everyday lives positively or negatively”, “An informed patient is a healthier patient.” On Monday, September 22nd, visits were made to various medical centers, bringing hope and emotional support to hospitalized patients, delivering ASOPALEU buttons and CML awareness day pins, along with “What is my PCR IS?” information booklets. The ASOPALEU board, would like to display their pride and satisfaction of being an active member of CML ADVOCATES NETWORK, by sharing their desire to improve the quality of life of patients and their families. “All united, all unique”.
Philippines: On 21 September 2014, Touched By Max (TBM) Philippines’ President Rod Padua guested on Prime Time Cable TV, ANC-Dateline Philippines. He promoted World CML Day by reaching out to a noontime audience the importance of having oneself diagnosed periodically and also, stressing that this kind of leukemia is basically curable, that with the proper access to treatment patients can live a relatively normal life. He responded to questions regarding the advocacy portion of having to live with the disease as a caregiver to his son. He discussed the psycho-social aspect of assisting patients through TBM and the medical assistances available through tie-ups with significant stakeholders. Rod was with Dr. Tess Dumagay, a hematologist specialist connected with the leading government institution, the Philippine General Hospital. She discussed the scientific angle of CML and the prevalence of the illness in the local setting. She also emphasized the importance of adherence to dosage and having to take the medicine at basically the same time each day. Dr. Dumagay also disclosed why 9/22 was chosen worldwide as the date for World CML Day by briefly explaining the translocation of chromosomes 9 & 22. The following hours saw Rod received a number of feedbacks from existing patients nationwide that are unaware of TBM and the CML assistance programs available. An upload to Youtube (by ANC) for the whole episode is forthcoming.
Canada: On September 22, the Canadian CML Network comes together with CML-IQ, Canada’s newest online site for people living with CML, to raise awareness about CML and the patient experience. Using critical information gathered from an ongoing patient survey done by CML-IQ, in addition to a powerful infographic, we are able to show that while the CML community has come so far in terms of treatment options and outcomes, we have so much farther to go when it comes to educational and social support – two things that are so critical to managing health and overall wellness. In addition, with the help of Novartis Pharmaceuticals Canada, Inc., supporters of the Canadian CML Network have created a video series called, “My CML Life.”
Macedonia: Macedonia was also among the countries that marked the World Day of CML patients 22/9. We made the marking in the center of the city and we had a great response from our members, the citizens and the media. The event was reported by all the TV stations and some newspapers. The motto of our campaign was – Together we are stronger, and the aim was to place on a Positive list II generation of TKI drugs, i.e., Nilotinib and Dasatinib – Tasigna and Sprycel.
Romania: Romania celebrated World CML Day 2014 with their spot “Adriana exista“ a film about a patient with CML. Link: https://www.youtube.com/watch?v=sA4T_t2uEkM. Some famous actors participated in this film 2 years ago but, it is very close to this year theme: Adriana exista! Be aware of her existence! The group also spread more than 10.000 leaflets and folders in all the hospitals in Romania through a network called: info sanatate; events called “How to web about CML” were organized (there was one for journalists and one for patients, taking place Friday and Saturday in Bucharest, Novotel Hotel); patients shared their life journey with CML with journalists and other patients, including Adriana – the girl from the film; the patient group also organized a street information campaign; apart from that, a group of patients with CML was in NoRo Center and Facebook messages were sent.
Azerbaijan: Azerbaijan’s first School of patients with HML took place at Insttitute Gematologiya on Sept 22. The Director of the Hematologist Zokhra Alimirzoyeva, Chief Hematologist of the Country institute Chingiz Asadov, and the director of the organization of patients with leukemia, Mekhriban Bagirova, participated at this event. Also about 20 patients with HML took part. The school passed successfully, patients received the necessary information, and also responses to all questions exciting them. I hope in slezhuyushchy year this day to carry out even more extensively.
Thank you for sharing your initiatives and inspiring the community!