“CML Awareness Day” Activities 2008-2010

A number of patient organisations have conducted initiatives on “CML Awareness Day” on the national level in previous years. For example:

• On 22 September 2008,The CML Society of Canada announced the creation of the first CML Awareness Day in Canada, to promote education about the progressing cancer of the blood and bone marrow. The society was the first CML organisation world-wide to organize “CML Awareness Day” on 9/22 on the national Level.
• On 22 September 2010, the CML Society of Canada hosted a buffet lunch on Parliament Hill for all Canadian Senators and MPs. The event raised awareness for CML, the work of the CML Society of Canada and the need to improve bone marrow registries in Canada.
• On 22 September 2010, the National CML Society (USA) has announced that 22 September has been designated as CML Awareness Day in the State of Alabama.

If you know of more activities in previous years, please send us an email.

“International CML Awareness Day” Activities in 2011

For the first time, this 22 September (9/22) 2011, patient organisations across the world were collaborating on Sept 22 to raise awareness of the needs of patients living with CML. Patients were providing more than 140 photos of CML patients and CML initiatives, more than 2100 individuals signed the proclamation to declare International CML Awareness Day, and patient groups world wide were organizing initiatives.

Activities happening to celebrate CML Awareness Day 2011:

During its General Assembly in February 26, 2011, LMC France proposed the idea of creating a world-wide Awareness Day on September 22. On 9/22, international CML Awareness Day was celebrated in hospitals throughout France with conferences and patients’ meetings. On September 23, an award ceremony of LMC France’s photo competition “All united, all unique” was held. This was followed by a concert given by LMC France’s patron. On Sept 25, the festivities ended with LMC France’s race. All profits from the concert and race will be given to medical research. In addition, LMC France produced a video with statements of support from patient advocates all across the world.

The CML Society of Canada is celebrating a weekend with gourmet food, first class blues and a cruise up to Quebec City and back to raise awareness about CML and raise funds for patient advocacy issues. The are going to the Parliament on 9/22, and are meeting Novartis Oncology Canada, Bristol-Myers Squibb and Pfizer, presenting stepping stones as symbol of the physical steps patients must follow on their path to conquer CML.

The National CML Society (USA) was asking the US congressional leaders this year for a resolution recognizing this day across the United States. A number of radio and TV shows were address CML in these days, including an interview of Exec Director Greg Stephens and his guest, basketball legend and CML patient advocate, Kareem Abdul-Jabbar. They were producing a video with Dr. Janet Rowley, discoverer of the 9;22 translocation.

The Max Foundation conducted a number of activities all across the world, from collecting signatures for the proclamation in all their national organisations, providing video interviews about CML, creating awareness through their blog and their website.

The Macedonian Association for help in treatment of patients with CML held a press conference on 22 Sept to inform the Macedonian public about CML and will invite its members, representatives of the government (Minister of Health, Director of the Fund and Director of the Bureau for drags), and representatives of various non-governmental humanitarian organizations and Associations of other patients.

The Israeli CML Patient’s Organization celebrated International CML Awareness Day in few events. It took an active role in the national hematologists convention from Sep 21-24, and announced this day on a patients advocacy session on 22/9. On Sep 20 they held a special lab tours in 2 big hospitals in Tel Aviv and Haifa to educate patients about monitoring CML.

Esperanza Viva (Colombia) shared a day in the countryside with patients, relatives and friends. They provided information about quality medicine and patients’ rights and were providing leaflets on CML at hospitals. They have laughter yoga and relaxation sessions, corporal spa and dance courses. They published a video to motivate those patients who have had recent diagnosis to keep on dreaming about a future ahead. See here

Vivre avec le LMC (France) held the associations’ day in the North of France on Saturday, September 10 and emphasized the event, and a potluck dinner was held on September 24 with all the members and friends of Vivre avec la LMC.

Alianza Latina, the Latin-American Alliance of Organizations Supporting People Living with Blood Diseases, joined International CML Awareness Day by signing the proclamation and making its members aware about the initiative (web: http://alianzalatinahemo.org/esp/nt.asp?nt=282, Facebook http://www.facebook.com/red.alianzalatina)

CML organisation AMAL from Morocco organized activities at an historic place in Marrakech on that day

The Russian CML Online Forum cml-stop.ru published LMC France’s video for its Russian members, and changed the design of the forum to represent CML Awareness Day. It issued a press release on CML Awareness Day which was published on multiple web sites.

Leukaemie-Online (Germany) issued press events on 22/9, together with CML experts and researchers, to inform the public about CML as a model and success story for personalized medicine. It was covered e.g. in one of the leading newspapers for medical professionals.

The International CML Foundation (iCMLf) celebrated International CML Awareness Day at the opening of the iCMLf-ESH meeting in Portugal on 22/9, where Jorge Cortes from MD Anderson Cancer Center in Houston, TX stressed the partnership of physicians and patients both during the opening of the ESH conference as well as in their meeting with their worldwide scientific advisors.

ASAPHE (Venezuela) gave interviews with the media with the participation of doctors, ASAPHE board of directors and lab representatives, held a conference on 17 September, will meet the Venezuelan Society of Haematology to request their support of CML Awareness Day. A Catholic Mass was celebrated on September 22nd for all those in the Associations who are registered in CML Advocates Network’s web page.

The All-Russian CML patients’ organization “Sodeystvie” held a press conference in RIA-news with paticipation of the leading hematologists of Russia as well as politicians. A videoclip with interview of the CML patients and doctors was published. Publications on the Internet were published, and posters printed. The organisation started a petition towards the health ministry of the Russian Federation to improve access to CML treatments, see http://sodeystvie-cml.ru/

In Serbia International CML Awareness Day (22/9) has been celebrated by the CML Association Serbia in many ways! They have started the campaign about 22/9 by announcing it on their website. Many of our patients (around twenty) signed for the proclamation on cmladvocates.net. A the press conference, where journalist were informed about 22/9, CML advocates network, iCMLf, and the campaign, was held, which led to broad media coverage. They were informed about the work of CML Association Serbia as well. The meeting of the board of directors of our association was also held.

The National CML Society (USA) has also set up a page on Facebook where patient organisations were sharing their activities on International CML Awareness Day.