CML Awareness Day Activities 2012
Ukrainian CML patient organization “Association Of patients with chronic myeloid leukemia” OSANNA will hold the “First Conference of the Russian-speaking countries for patients with chronic myeloid leukemia (CML) and hematology physicians which will be held on 20-23 September 2012 in Yalta, Crimea (Ukraine). This event will be dedicated to the “World Day against CML (9.22)” (International CML Awareness Day 2012). The conference will bring together delegates from Ukraine, Russia, Kazakhstan and other Russian-speaking CIS countries as well as delegates and speakers from Western Countries.
The Slovenian lymphoma and leukemia patient association L&L will hold their the traditional september press conference for the first time in the Patient Association’s own premises. It is an important milestone for the organisation having an office dedicated just for their activities: meetings, workshops, and personal support to the patients.
The Israeli CML patient association is preparing a big gala dinner show on this day, with some leading comedy stars, with the slogan of “laughing for life”. They will also have a numbers magician whom we have asked to work a magic around the numbers 9 and 22. It is planned to film it and translate into English and share with the CML community. The organisation plans to produce a video with our patients singing an Hebrew song of optimism and hope, in the style like the song “We are the world, we are the people”.
The Croatian Leukemia and Lymphoma Society is planning to bring all the Croatian patients with CML to Zagreb and organize the programme for them here. They plan to hire buses from 3 main directions in Croatia in order to give the opportunity to all the patients, who would like to attend our programme, to actually come to Zagreb.
The CML Association of Serbia will hold a CML Meeting will be held in Belgrade for all our members and people with CML on 22nd September. The meeting will have three parts: promotion of the new booklet – CML Tracker, lecture about 22 an 9 chromosomes and the newest therapies in treating CML and the Questions and Answers session with doctors treating CML. A Press Conference will be held by the CML Association on 22/09. The topic will be announcement of the 22/09 and the promotion of all our booklets and website in order to help primarily newly diagnosed patients. During the meeting we will photo those members who would like it and we will send the photos to you as some of new CML faces.
LMC France I will launch several new videos on 22 Sept, produced by LMC France, such as Media initiative in partnership with a Public Research Society. On 23 September 2012, LMC France organizes a foot race named “All United, All Unique” (this is also their slogan), a race lively and friendly. The goal of this day is to relay information about CML among patients and the public, in a moment of conviviality and entertainment. At a special stand “Meetings with health authorities” with partners INSERM (National Institute of Health and Medical Research), IPC (Paoli Calmettes Institute), AP-HM (Marseille hospitals), Oncopaca, Canceropole; EFS (Blood French Establishment), LMC France will be able to present an exposition named “From fundamental research to clinical research”. This exposition will allow a presentation of the contribution of each partner for advanced research and patient care.
German Leukämie-Online kicks off a Germany-wide initiative “CML: a little feat” on 21/09 that will run during the whole year until 22/9/2013. On 21/9, we will have an evening event in a cabaret with patients from all across Germany. On 22/9, we will join a cancer patient information day where CML Awareness Day will be celebrated with performances of artists, complemented by an informational session with a CML expert who is involved in key CML trials. We have broad support from a number of German hematological hospitals, from psychooncologists, from other patient organisations and other stakeholders. We will collect patients’ and doctors stories of “little feats with CML”, will ask patients to do artwork. Posters and flyers on the campaign have been sent to all larger hematological centers and oncology practices, and will be disseminated via the most popular health professionals newspapers in September. It will be complemented with activities via social media and via webinars. The motto “A little feat” has been chosen as for patients, it might be a challenge to live with CML, to be courageous and have faith, to articulate the disease or keep it secret, to become old with a chronic disease, to change therapies or address side effects. For doctors, it is sometimes a challenge to put the patient at the center, to give best possible medical care, and to address key topics like side effect management, adherence or psychological issues. The campaign website is available at http://www.kleines-kunststueck.de.
The Max Foundation is coordinating the campaign “What is My PCR?”, raising awareness about the importance of CML treatment monitoring. It aims to increase awareness of the need to monitor CML treatment and the right of every patient to know their test results. The “What is MY PCR?” website provides information about PCR, resources for patients, a way for organizations to partner in the campaign, and information about how to request free “What is MY PCR?” buttons. Campaign materials are provided in multiple languages to encourage discussion around the benefits of PCR. The Max Foundation will also host a booth at the ESH meeting in Baltimore on 9/22 to promote the ‘What is MY PCR?’ campaign, trying to gather support from physicians to improve monitoring of CML treatment.
The US-based Leukemia & Lymphoma Society will promote CML Awareness Day in their national newsletters during September which is “Blood Cancer Awareness Month” in the USA.
AMAL (Morocco) celebrates the CML international awareness day under the theme “Together against leukemia”. On the day, the organisation will visit the hematology and pediatric oncology department at Mohamed 6 hospital in Marrakech. It will campaign for the early detection of leukemia. A blood donation campaign in coordination with the Association Nakhil and blood center of Marrakech city will take place. AMAL will present achievement of patients and the organisation (leaflets, videos, photos). An evening event will feature testimonies of patients, families, physicians, volunteers, as well as a show with dancers, storytellers, artists and a theater. Balloons as a symbol for healing and compassion will be released. The new AMAL website will be launched.
“Sodeystvie” (Russia) will participate in the general conference of CML in the Crimea (Yalta, Ukraine). It will bring together representatives of patient organizations from Russia, Ukraine, Kazakhstan and other Russian-speaking countries. The initiator of the conference is “Sodeystvie” (Russia), “Osanna” (Ukraine) and patient organizations from Kazakhstan. Host Party – Osanna. They will cover the events of the International CML Awareness Day as well as last year.
The National CML Society (USA) will have groups across the country to join together, meeting in their local areas, as well as connecting via video feed to have a nationwide “town hall” type meeting. Each groups will be sharing all the things going on in their community and then we have a special guest scientist that will join all the groups for an open Q&A session on all things CML, their research and discovery.
IZUMI (The Association of CML patients and families, Japan) has already started to promote 9/22 as CML Awareness Day in June, including having the CML Awareness Day Logo translated into Japanese, and having received great feedback. All the association’s T-Shirts show the 9/22 CML Awareness Day logo. The International CML Awareness Day poster is being used in planned activities.
The Thai CML Patient Group (Thailand) will arrange the big event for 2012 World CML Awareness Day under the concept “Our Journey towards the Cure for CML”. The event will be held on Saturday 22nd September 2012. The activities include CBC test for the event’s attendees, press conference by Thai CML Working Group and patient educational session on “What is My PCR?” by Prof. Saengsuree Jootar, MD, Chairperson of Thai CML Working Group. The group will also create awareness to public through CML Awareness Day Logo contest which will be announced the winner’s name on the same day.
AEAL – Spanish Group of Lymphoma, Myeloma and Leukemia Sufferers will hold a press conference on September 19th to announce the different activities they are going to carry out because of the CML Awareness Day. They have created a new website to give information about LCM not only to patients and their relatives, but also the society: http://www.aeal.es/dialmc2012/ . On September 22nd, there will be an oriental dance festival in benefit of AEAL and other activities will be an informative event hold in Bilbao, online seminars and psychological workshops. AEAL will also use the International CML Awareness Day Logo in their website and visitors will have the opportunity to sign the proclamation.
ASAPHE (Venezuela) will hold the meeting of the Association with the participation of the Haematological Venezuelan Society, haematologists from the five hospitals who assist CML patients in Caracas, other health professionals, members of other associations of patients with hemato-oncological illnesses and a group of patients from Caracas metropolitan area. ASAPHE will also hold a press conference about the World CML Awareness Day, incorporate the CML Awareness Day in the 2013 calendar of the Venezuelan Cancer Society, and send information materials about CML´s conscientization day to physicians in the country side as well as PCR information materials elaborated by the Max Foundation and translated by ASAPHE under the supervision of two hemato-oncologists members of the Advisory Board.
CML Macedonia will have a joint program with the Clinic of Hematology and Novartis Skopje, and hold a press conference. The program will feature a beautiful movie “Optimist” provided by Jadranka Santini from Croatian Leukemia and Lymphoma Society. A lecture on what is CML, early detection and appropriate therapy will be provided by a CML expert. The importance of international CML day and cooperation between CML Association and the Ministry of health, the Fund and Clinic of hematology will be presented.
ALMA (Argentina) will have a theatre performance by a local theatre company in Buenos Aires, about a boxer who, just before the most important fight of his life, is diagnosed with CML and is faced with a very important decision – to risk his life in this fight, or to abandon fighting forever because of his medical condition. The theatre company hosting this event, Teatro Porteño, is in contact with ALMA since the beginning of the year, and they have worked together along with the MAX Foundation in the gathering of accurate medical information for the play writer to create the script. Part of the funds collected with this play, which will premiere today, September 7th, will be donated to ALMA. On September 22nd, the whole performance will be for the benefit of ALMA. At the entrance of the theatre, ALMA will have a booth where they will give away information about ALMA, CML and CML Awareness Day. During the first half of September, members of ALMA will appear in 4 radio shows and 1 television show, promoting the play and the organization, as well as mentioning CML Awareness Day and the special performance of that day.
ESPERANZA VIVA (Colombia) has written to the Presidency of the Republic, and also sent copies of that letter to the Social Protection Ministry, the Ombdusman, the Health Superintendent and 32 provincial governments, to make those who are responsible for the well-being of CML patients aware that they have to do an effort altogether, fulfil and develop al the basic standards that have been established on the treatment guides published by CML experts and work together to improve the access to diagnosis, treatment and attention. The organization will provide a cycle of speeches for CML patients on patients’ rights on continuous quality treatments in the cities of Armenia, Pereira, Manizales and Bucaramanga. Esperanza Viva will make people know about CML and alert signals through the media: Radio, TV, Newspapers, Internet, Social Networks (Facebook, Twitter), emails… It will start a survey throughout the country to be able to measure CML patients’ quality of life with the different treatments available in Colombia.
The Colombian Foundation for Leukemia and Lymphoma organizes a very special celebration in a botanical garden with a presentation of an excellent hematologist who we talk about the importance of adherence to treatment in CML. The day will conclude with a delicious and beautiful cake with the logos of CML Awareness Day and the Foundation and of course music where all sing together the song celebrate life.
In Guatemala, ASOPALEU celebrates the 9/22, starting with an educational morning for patients and family by our advisers about “What’s new on CML 2012”, we cover very important topics such as Hemato Oncology, Side Effects, Genetics, Nutrition, Skin Care and “The Encouraging a positive Attitude” by a Psychiatrist. Also a part of the day is dedicated to a testimony, this year we are having a couple of teenagers who have overcome the CML since childhood, we as well have a group of young and enthusiastic crew call “Red Nose Producciones” that with their good attitude and love let all people discover the power of have a good time smiling and Raffle gifts. For this activity ASOPALEU goes the extra mile, deciding to provide people with an educative manual about CML information of the Leukemia and Lymphoma Society and Treatment recommendations for patients by The CML Advocates Network, printed by our own. We start very early designing posters, T-shirts with the “Tous Unis, Tous Uniques” slogan proposed by the LMC France. We count with the incredible participation of volunteers, graphical designers, organizers who work ad-honorem, because we strongly know that giving is how we receive.
Gruppo AIL Pazienti LMC – Italian CML Patients Group – will hold a webinar to celebrate the International CML Awareness Day 2012. The webinar, short for “web seminar”, is a live interactive presentation over the internet and it will take place on September 26 from 6 PM to 8 PM. After the welcome message from Professor Franco Mandelli, Professor Michele Baccarani will talk about “living with CML and trying to get well”. Plenty of time will be left for questions at the end of session.
Estonian leukaemia and lymphoma patient organization is planning to celebrate the International CML Awareness Day with the organization members meeting and dinner party in Tallinn. The newest therapies in treating CML will be introduced in the meeting. As Estonia is a small country, patients of other leukaemia forms and supporters are also invited.
CML Home of Hope, Shanghai Roots & Shoots (China) will celebrating this day under the motto ‘All United’ to raise the awareness of CML in the society. Members, including CML patients, their friends and families in Shanghai will be invited to get to know each other and share their stories of living with CML. This will include an update by a leading hematologist on the latest clinical research achievements and clinical trials. A ‘Q & A’ game about the key tips during the remission of CML, such as ‘monitoring test result levels’, will be awarded with a little surprise. A Tai Chi practice will be offered, so that everyone, especially the patients, can enjoy a relaxing time while learning about some good thoughts on healthy lifestyle.
In Portugal, APCL (Portuguese Association Against Leukaemia) is celebrating 9/22 for the first time. The organisation will have big media impact with the message: “LET’S CELEBRATE LIFE!”. The main objective of this action is to celebrate life with patients, families, health professionals and the general public, conveying hope and calling attention to CML. At the event, the organisation will have painters, caricaturists, magicians, jugglers and clowns that will invite people to participate in this celebration of life, drawing attention to the major therapeutic advances in CML treatment. Just because, nowadays, it is possible to live with CML as we live with any other chronic diseases. And this is a fact that allows us to truly celebrate life!
The National CML Society (USA) has had a number of events throughout the month of September, including participation in the “What in MY PCR?” Campaign, publication of an Adherence Guide that has been distributed across the country to medical facilities, doctors, medical professionals, and CML families, opportunities to learn more about International Standard PCR testing, and a national radio tour covering 2.5 million listeners bringing greater awareness to CML. Additionally, the Living Well with CML Virtual Patient Summit will be held from 1:00 pm – 6.30 pm EST on Saturday, Sept. 22, 2012. Viewers will be able to submit questions during the webcast and get answers on the spot. The highly interactive program will also include in-studio cooking during nutrition discussions as well as exercise demonstrations.
The Romanian Association for Rare Cancers will hold an Information Day on CML on 9/22, 2012. The Campaign theme is: “Patients with CML exist. Be aware of their existence!”. Campaign leaflet, posters, flyers, stickers are available. A videoconference about CML among NoRo center and medical universities will be held, ending with a symbolic proclamation of CML International Awareness Day. The campaign will be supported by Social Media, e.g. with stories of patients. Between September 22 to October 1, 2012, the organisation will launch a petition for supporting the cause of CML patients. The goal is to have over 1000 signatures. Finally, a media contest will give the best Article Award for the CML Campaign 2012.
In the second year of launch of International CML Day, Friends of Max (FOM) in India has planned an elaborate all-day event in association with the prestigious Tata Memorial Hospital at its ACTREC center in Kharghar on the outskirts of Mumbai. This event will bring eminent physicians from the hospital face to face with CMLers and their care givers. The emphasis this year will be to create awareness about the importance of monitoring one’s CML by testing for PCR levels. This will be done by launching the Max Foundation’s ‘What is My PCR’ campaign on this day. After lunch, a celebratory cricket match will be played between two teams – the FOM volunteers and TMH physicians. The match has been aptly christened CATCH 22/9 CRICKET MATCH. In Hyderabad , FOM will be conducting a small motorcycle rally on CML day with the help of the local motorcycling fraternity in this city in Central India. A few of the local clubs here are very eager to be associated with FOM and help spread more awareness about CML and cancer.
In Poland, the members of two organizations of the patients with CML e.g. The Nationwide Association for CML Patients Aid and Association for Blood Cancer Patients Aid celebrate the International CML Awareness day by organizing a few local events, especially supporting the social initiatives of non-profit organizations of the Honour Blood Donors according to the motto: “A person’s greatness lies not in his possessions but in who he is, not in what he owns but in what he shares with others” (John Paul II). Some of the members of our CML patients associations will take part in the special TV programme and they will speak about the raising awareness of CML in our country. Later, the video film presenting this programme can be seen on the website of our Association. Also, we participate in the campaign “What is My PCR” organized by the Max Foundation on the all continents. In connection with this, we have prepared the Polish version of the original text of the Frequently Asked Questions (FAQ) on the website of this famous Organisations. Many CML patients in Poland are going to join to the international CML Patients Community and will be participating in the unique project “All unique, all united” launched by the Leukemia Patient Advocates Foundation (the legal host of the CML Advocates Network) in 22.09.2012.
As a new kid on the block, the new ”Leukemia Lymphoma Myeloma Patients and Research-Education Association’ (Turkey), shortly “LLM Birligi”, will publish the success stories of CML survivors on website and Facebook. www.losemilenfomamiyelom.org
The Leukaemia & Blood Cancer New Zealand launched a new patient newsletter “Leukaemia Today”, media articles about Glivec in New Zealand 10 years on post funding, and a dedicated CML education session as part of a patient conference the Blood Cancer Patient Forum.
The Mexican Association for Leukemia and Gist (AMELEG) holds event in Mexico City, with presentations, promote good nutrition, exercise, information leaflets on CML. The day is supported by Novartis, Max Foundation, Mexican Association in Fight Against Cancer (AMLCC) etc.
The Turkish online community KMLTurkiye.com has launched its English speaking section on International CML Awareness Day 2012. The website, run by a CML patient, aims to increase the awareness about CML in Turkey.
The CML Association of Albania called “Shoqata ne mbrojtje te pacienteve me leucemi” organized a CML Meeting in Tirana with all members, on 22nd September, in honor of the International CML Awareness Day. The main purpose of the event was to raise awareness of patients with CML, also to raise awareness of the population about this disease, as well as to require health authorities to make possible the treatment of patients with CML with the best treatment option. During the meeting, PAG members held 1 minute silence in honor of one of the CML patients who passed away in August 2012 due to not having access to the right treatment. At the end of the meeting they distributed materials about adherence to treatment (brochures for CML patients). The meeting was followed by a lunch with all members participating in the event. Newspapers and TV stations covered the activity and also forwarded the requirements of the CML PAG to health authorities by writing articles in newspapers. CML association came up with a petition to the Minister of Health in order to have as soon as possible, in the reimbursement list, the best treatment option for their disease. In this event was invited to participate head of CML PAG from Kosovo, also the head of Thalassemia PAG of Albania (which is very active). They congratulated the CML PAG of Albania for organizing this event.
CML Awareness Day Activities in previous years (2008-2011)
A number of patient organisations have conducted initiatives on “CML Awareness Day” on the national level in previous years (2008-2011). See here.