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Believe Again Video
Watch "Believe Again" written by Will and Steve Newman 

 Time is running out to get your copy of Believe Again, Will Newman's holdiay album. CDs make great stocking stuffers. 

Will's parents were kind enough to donate all costs of associated with producing the album so that all proceeds from album sales will benefit CLL Global. 


Will is also available to perform live. If you or someone you know is planning a fundraiser or hosing an event, his parents have also graciously offered  facilitate his touring efforts.  


Go to Will's website to learn more about purchasing the album or to contact Will. 


 Click on the text to learn more about:


the discovery of microRNAs in CLL 


- the development of plasma microRNAs for CLL



Research Momentum 
If you are not currently receiving hard copies of CLL Global's newsletter, CLL Research Momentum, but would like to, please email us your full mailing address.




Research Momentum 


A recap of video interviews from ASH 2010 provided by Patient Power. More vidoes to come the after ASH 2011 meeting.

Stephan Stilgenbauer discusses Genetically-Directed Therapy for CLL
Dr. Stephan Stilgenbauer discusses genetically-directed therapy for CLL


Dr. Alessandra Ferrajoli provides expert advice for CLL in the older patient
Dr. Alessandra Ferrajoli provides expert advice for CLL in the older patient


CLL: A Patient's Perspective
CLL: A Patient's Perspective


Is there something specific you want to read and learn about? 


Let us know if you have any comments or suggestions for improvement.


You are the reason CLL Global exists, and we want to hear from you.



Happy Holidays


One of the real joys of the Holiday Season is the opportunity to say Thank You!


Wishing you and your loved ones the very best for the holiday season and the New Year.



December 2011 



Welcome to the last issue of Tidbits for 2011. We started Tidbits earlier this year without expectations. The response from our readers has been positive, and we have enjoyed having an outlet to have more contact with you. We hope you find this newsletter informational and beneficial.  


As you will read below, Dr. Michael Keating has big plans for next year. It will not be possible without your support. We also continue our series on chromosomal abnormalities in CLL. This month we focus on chromosome 13.


Thank you for an outstanding year. There will be much more to come in 2012.

PRESIDENT'S CORNER: opinions & reports from Dr. Keating

Dr. Michael KeatingI've said it before and I will continue to declare that the only people who are going to change the outcome for CLL patients are CLL patients. So this year include yourself on your gift list. It is okay to be selfish when your heart is in the right place. And tell your friends and family that instead of receiving a fruit basket or bottle of wine, a gift to CLL Global Research Foundation would have a positive impact on your life.


CLL Global is a gift to CLL research from patients, and their generosity has enabled us to move the ball forward so that we are now in a position to discuss the potential cure of CLL. I am tired of having my optimism challenged by CLL, and I am ready to reciprocate your gifts by discovering the puzzle piece that will eliminate any suffering from this disease.


Two major discoveries have led to realistic optimism that the cure is near. We've previously reported on B-cell receptor inhibitors, which dramatically reduce the amount of CLL in the body while sparing the immune system. The other hot topic is chimeric antigen receptors (CARs). While the first CAR tested in a clinical trial was successful, it caused extreme immune damage and may prove to be cost prohibitive. I have been meeting with researchers who might be able to improve the original CAR. While there is still a substantial amount of work to be done, it is hoped that additional clinical trials will be mounted in 2012.


Clinical research is very costly. However, the reward is great. Many of you, your families and friends are repeat donors who have supported CLL Global for many years. I now have the temerity to ask for those that can do so to increase their gifting. giftsWe need to establish a fund of $1 million per year for the next three years to support the development of CARs. The new B-cell receptor inhibitors are already having a dramatic effect for patients, but we need to conduct more trials. We also need to continue funding the quality research we have been supporting.


We have a lot we want to put on our plate in 2012, but we need you to be involved in order to accomplish our goals. Whatever you can do to support this endeavor will be sincerely appreciated. Spread the word about our mission. Do it with passion. Whatever you can give, however you can contribute, will be a gift to the world that will indeed also be a gift to yourself. A cure for CLL will be the best gift of all. 


Read the extended version of the article here.


Focus on: 13q-


Currently the most common genetic abnormality in CLL is loss of chromosome 13q (13q-). As a sole abnormality, meaning that a patient does not have any other chromosomal abnormalities detectable by florescence in situ hybridization (FISH), 13q- occurs in roughly 50% of all CLL patients. It is also the most favorable abnormality.

13q deletion detected by FISH
13q- detected by flourescence in situ hybridization (FISH). (Image from www.atlasgeneticsoncology.com)


Patients with 13q- have a long median survival time. According the MD Anderson Cancer Center CLL Database, approximately 45% of 13q- patients will not need treatment. Of the 13q- patients that do need treatment, approximately 75% will achieve complete remission and stay in remission for several years. 13q- patients respond well to multiple therapies, including FCR. They are also showing good responses to lenalidomide and the B-cell Receptor (BCR) antagonists. Both of these treatments are currently being tested in clinical trials.


The deleted region of chromosome 13 (13q14) was the discovery point of an association between microRNAs and cancer. Drs. George Calin and Carlo Croce discovered that microRNAs played an important role in the development of 13q- CLL.

chrom 13 del
The area highlighted in red is part of the deletion 13q14 region where an association was made between cancer and microRNAs. (Image adapted from www.cytocell.com)

Prior to this discovery in the early 2000's, microRNAs were considered to be insignificant pieces of DNA. Their discovery led to an outpouring of microRNA research in cancer and other diseases. In fact, microRNAs are already starting to be used as prognostic tools in cancer.



What we know about 13q-:


  • The most "favorable" abnormality
  • Many patients will not require treatment
  • Patients who do need treatment enjoy long term remissions


The trend in research is that the more we learn, the more we have to question. There is published data suggesting that within the 13q- subgroup, a new "sub-subgroup" may be emerging. According to a Mayo Clinic study published in the British Journal of Hematology in 2009, patients with a higher percentage of cells (greater than 65.5%) having 13q- may be associated with a shorter time to first treatment. However, there was no difference in overall survival regardless of the percentage of cells with 13q-.


Others have noted that the length of the chromosome deletion is important. A recent publication in Genes Chromosomes and Cancer by the Centro di Riferimento Oncologico group in Italy indicates that chromosomes which are missing a larger portion of genetic material from the 13q region may be related to a more aggressive clinical course. This information still needs to be verified with additional studies.


Going Forward:


Because 13q- patients have such good outcomes, CLL research is being directed more toward patients with worse outcomes. However, there are a few areas related to 13q- which need to be addressed:  


  • Verification of the prognostic influence of the size of the deletion of 13q-
  • Further define subsets of 13q to determine if standard care needs to be modified


The Big Show


The American Society of Hematology (ASH) is the largest organization relating to blood disorders and associated systems in the body. The organization promotes the advancement of research and education. ASH publishes the journal Blood, which is one of the most cited hematology journals in the world. In addition, ASH holds an annual meeting in December for hematologists. Last year's meeting had 20,000 registrants. While there are several important meetings throughout the year, ASH is the meeting researchers look forward to, as they present their ground-breaking data from the laboratory to clinical trials.


There are several events held in conjunction with the ASH meeting. This year CLL Global is supporting a Friday Satellite Symposium on CLL, preceding the 53rd ASH Annual Meeting. On December 9th, members of the CLL Global Alliance will be

Drs. O'Brien and Stilgenbauer
Drs. Susan O'Brien and Stephan Stilgenbauer are both presenting at the Friday Satellite Symposium supported by CLL Global.

presenting novel information regarding CLL to oncologists and hematologists from around the world. The goal of the symposium is to provide knowledge that will improve the quality of patient care. The symposium presenters will cover the recent advances in the understanding of the biology of CLL as well as current and emerging treatment strategies including stem cell transplantation and immune therapy. The clinical relevance of genetics and the application of treatments according to genetic subtype will also be shared.


This symposium will give us exposure to scientists from all over the world and allow us a platform to promote CLL Global and what we do. After the symposium we will have the opportunity to see what others are doing to advance the field of CLL research. Between ASH and the CLL Symposium, we should have a lot to talk about in the next issue of Tidbits.



It is because of people that believe in our cause that we have been able to accomplish our goals. It is time for all of the small victories in CLL research to result in something big for all of us. Together we can make things happen. We are ending 2011 with optimism that 2012 will be even better.



CLL Global Research Foundation