Two years ago this month I was diagnosed with a rare blood cancer that up until 2001 was considered an automatic death sentence. This year, on September 22, my cancer is under control, I'm expected to live a normal lifespan, and I will join others around the world who are now LIVING with my disease. Newsweek magazine calls the targeted gene therapy used to treat my disease "the closest thing we have to a cure for cancer."
So 2011 is a very special year. This year, for the first time, patient advocacy groups around the world will celebrate CML Awareness Day in support of patients with chronic myelogenous leukemia, the rare blood cancer which has played a profound role in the history of cancer discoveries and treatment.
CML results from an acquired genetic change which affects a person’s DNA by creating an abnormal chromosome known as the Philadelphia chromosome. This change occurs due to a translocation between chromosomes 9 and 22 which leads to the development of a cancer causing gene.
The first direct link between chromosomal abnormalities to cancer came with the discovery of the Philadelphia Chromosome in 1960. Understanding abnormalities in the replication of the chromosome led to the development of a genetically targeted cancer drug for CML in 2001, considered one of the top breakthroughs in cancer treatment. This development changed CML from a predominantly terminal illness to one that is highly treatable. Today, with proper medical care, most CML patients can expect to live a normal lifetime.
Now, ten years after the introduction of life-saving treatment, more people than ever before are living with CML, and are ready to celebrate their lives. The CML community is also seeking stronger support for a growing patient population that faces lifelong medical expenses and treatment, unlike other cancers in which treatment is for a specific period of time.
While small in number, CML patients are united worldwide. The CML Advocates Network, which organized the international CML Awareness Day, represents 54 patient groups in 44 countries from all continents. The date originated in Canada in 2008 and was also adopted in the U.S. that same year. 2011 marks the first year this is a global event and celebration.
To learn more about activities in the U.S. please visit the National CML Society at http://www.nationalcmlsociety.org/cml-awareness-2011-0
For information on the CML Society of Canada, please visit http://www.cmlsociety.org/?q=node/207
All CML patients are welcome to participate in online activities provided by the CML Advocates Network at http://goo.gl/FFxa8
All CML patients and caregivers are invited to submit their photos for the global “Faces of CML” page at http://www.cmladvocates.net/facesofcml
Some of the planned activities for CML Awareness Day include:
• The National CML Society (US) will be asking the US congressional leaders this year for a resolution recognizing this day across the United States.
• 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
• Leukaemie-Online from Germany will hold press events with CML experts and researchers, to inform the public about CML as a model and success story for personalized medicine.
• LMC, from France, plans conferences, patient meetings, a photo competition, a concert and a race, as well as a video with support statements from patients around the world.
• The Macedonian CML group will hold a media event to educate the public and health officials about patient concerns.
• The Israeli CML patient organization will take an active role in a national medical conference and hold special lab tours in hospitals in Tel Aviv and Haifa to educate patients about monitoring CML.
• The Latin-American Alliance of Organizations Supporting People Living with Blood Diseases – Alianza Latina –plans to educate members about the initiative.
• Morocco’s patient group will organize activities at an historic place in Marrakech.
• The Russian CML group will share the French group’s video with members.