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NEWLY DIAGNOSED

If you have recently been diagnosed with CLL, you probably have questions.

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List of CLL specialists around the world
(Provided by ACOR)

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FEATURED VIDEOS

Patient Power Videos from ASH (American Society of Hematology) held in New Orleans, Louisiana

Dr. Michael Keating

(MD Anderson Cancer Center)

CLL Research: How Far Have We Come? Where are We Headed?

Dr. Laurence Cooper

(MD Anderson Cancer Center)

Understanding Advances in Gene Therapy

UPCOMING ALLIANCE MEETING

CLL Global is hosting the next Alliance meeting January 18-19. CLL investigators from around the world will be gathering in Houston, Texas to address topics such as novel agents, genetics, immune reconstitution, immunotherapy and microenvironment.

EXTRA! EXTRA!

The latest issue of the CLL Research Momentum was recently mailed out.

Email us your mailing address if you currently do not receive hard copies and would like to be added to the mailing list.

info@cllglobal.org

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SEASONS GREETINGS!!

Thank you for supporting CLL Global over the last year. Our success would not be possible without each of you. January & February of 2014 will be busy. We look forward to bringing together the CLL research and patient communities. In addition, we will be announcing our newest grant recipients in early 2014.

December 2013

Dear (Contact First Name),

Happy holidays from all of us at CLL Global! 2013 has been a momentous year and 2014 is predicted to be just as productive. Below Dr. Keating provides commentary on past progress and future plans. We are excited to invite you to an interactive patient forum. Details below. We look forward to sharing with you the research successes which I expect in 2014.

PRESIDENT'S CORNER:

OPINIONS & REPORTS FROM DR. KEATING

CLL Research: How far have we come?
Where are we headed?

Dr. Michael Keating, President and CEO

CLL research has made great advances in the last 5-10 years; however, there are even greater things to look forward to in the coming years. When the therapeutic agent fludarabine was first used, it generated a reasonable response rate, with 2-5% of patients living 8-10 years. Now, about one-third of patients are free of leukemia and continue to be alive and well 10-14 years. We have doubled the average survival rate; better yet, we understand a lot more about the genetics and progression of the disease.

Now and in the coming years, we will not use a "one size fits all" treatment approach as in the past. We will be giving very selective and specific treatments to subsets of patients. Within the scientific community, there is ongoing discussion as to whether we attempt to completely rid a certain subset of patients of disease or if we should focus on controlling the disease during the life expectancy of the patient. Neither of these questions were options 5-10 years ago.

As a community, we are also questioning if a single agent can be taken, or if it needs to be combined with other agents. For example, rituximab used to be the "American Express card" of lymphoid diseases..."you don't leave home without it"; however, now the discussion is whether it helps all drugs or just chemotherapy drugs. We need to work on developing predictive assays to look at the various combinations of drugs.

If I had to provide a headline to summarize 2013, I would say "The Floodgates are Open For Opportunities." A number of promising clinical trials opened and completed enrollment in 2013. More patients than ever are looking for spots on available clinical trials. Data from these trials is emerging; intelligent, independent investigations are going to be paramount in sorting our way through the trials. We do not know the long-term downstream effects of the new treatments which presents a challenge. With CLL research, you need to have a long attention span because complications can occur very late with this disease.

Overall, the future of CLL research is going to be wonderful, and we have to work very hard to make it as effective as patients deserve.

Sincerely,

THE HAPPENINGS

Understanding the New World of CLL: What it Means for You.

With the understanding and treatment of CLL rapidly evolving, it is vital for CLL patients to stay informed, take an active role in their care, and maintain an ongoing dialogue with their healthcare team. On Saturday, February 1, 2014, there will be a free interactive forum for CLL patients at MD Anderson Cancer Center in Houston, Texas.

A panel of CLL experts and patient advocates will explore the latest CLL treatment and research news, effective tools for treatment, strategies for dealing with CLL complications and treatment side effects, and tips for communicating with your healthcare team and family members. There will also be inspiring stories from patients that are living well with CLL.

Dr. Michal Keating will be one of the presenters. Additionally, there will be an oncology nurse practitioner and social worker, as well as patient advocates. Local advocacy groups will be on hand to offer support, provide information on how to access a wide range of resources, and help you connect with the CLL community.

Registration for the event is free but required. Join us for this free live event produced by Patient Power and CLL Global Research Foundation. To register, click here.

If you cannot make it to Houston, don't worry. Patient Power and CLL Global will post videos from the event. We are also planning additional forums in Florida and California later in 2014.

PARTNER'S PERSPECTIVE

Eat Well, Live Well, Be Well Fundraiser

Dr. Keating with Dr. Ed Jaffe

Dr. Ed and Inge Jaffe are always up to something good. This was the third year in a row that the Jaffes hosted a fundraiser to benefit CLL Global.

This year's event, held in November with the theme "Eat Well, Live Well, Be Well", featured a farm-to-table dinner. Besides good food and friends, the event featured the culinary and musical talents of CLL patients. The band leader is a CLL patient who has been in remission for several years and happens to be a former patient of Dr. Keating. The chef is also a CLL patient who has been fortunate to currently not need treatment.

There were several quotes on the tables including one of Dr. Jaffe's favorite from Hippocrates, "A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illness." The Jaffes raised $20,000 from this fundraiser.

A big thank you to the Jaffes, their friends and family for the continued support!

THANK YOU FOR SUPPORTING US!

Best wishes this holiday season. We look forward to sharing more with you in 2014!

Sincerely,

CLL Global Research Foundation