August 20, 2019
Dear Friends and Supporters of the CLL Society,
We invite you to attend our CLL Society Webinar
Tuesday, Sep 10, 2019, at 10:00 AM PDT / 1:00 PM EDT
Planning Ahead: Being Prepared for End of Life
Join this CLL Society webinar to address the fears about dying that are normal in the months after diagnosis, how to obtain help with difficult decisions or symptoms from palliative care, and how end of life care is enhanced with hospice. Register here.
End of life discussions and planning can be difficult, but they are important for oneself and one’s family to have in place before they are needed. Review basic information and resources in the Planning Ahead section on advance directives and hospice care. Information and resources about palliative care are also included, which can be administered at any time in a person’s treatment and is not necessarily associated with end of life.
If you haven’t already completed the CLL Society’s Tribune survey about end of life planning and palliative care, you can participate here.
TEST BEFORE TREAT
Predictive/prognostic testing: What it is.
Why you MUST make sure your doctor does it.
Download our TEST BEFORE TREAT One-pager.
Print it out. Take it with you.
DON’T LEAVE HOME WITHOUT IT!
This week we are announcing the launch of the most critical campaign the CLL Society has ever undertaken: TEST BEFORE TREAT.
Dr. Koffman’s ASH 2018 interview with Dr. Anthony Mato outlining the methods and results of 2 patient registries studying the practice patterns of CLL doctors gives stunning credibility to the long-felt suspicion that many CLL patients are receiving treatment for their CLL without ever having had 3 simple predictive/prognostic tests performed before starting treatment… critical tests which help to sort out and point to which medications a patient is most likely to have success with, and which will almost certainly result in failure.
Wouldn’t you want to know before starting treatment? We thought so. Hear Dr. Mato’s important message here. Put this One-pager in your pocket. Bring it with you to your next appointment.
Take control.
Start the conversation.
Smart Patients Get Smart Care™
Patty Koffman, Executive Director
CLL Society 2019 Website Survey
We care about what you think. Please let us know what you like and how we can improve the CLL Society’s website and other services by going here.
Expert Access Is Open!
Expert Access, our free online second opinion program is open. If you live in the USA and want a second look at your CLL from a world expert, you are welcome to apply here. Even if you have used the program before, you may reapply if you need new clinical advice.
New Support Groups Forming
There has been interest in forming CLL-specific support groups in new locations! Please click on a link to take our short interest survey if you are interested in attending a support group in one of the following cities:
Ft. Lauderdale / Miami, FL
Fort Worth, TX
Buffalo, NY
Cincinnati, OH
Greater Lehigh Valley, PA
Greensboro, NC
Hartford, CT
Las Vegas, NV
Palm Springs / Coachella Valley, CA
Phoenix, AZ
Raleigh/Durham, NC
Sacramento, CA
Santa Barbara/Lompoc, CA
Sarasota, FL
St. Louis, MO
Seattle and All Points North
Toronto, ON Canada
Tucson, AZ
FundFinder
Pan Foundation has opened its co-payment assistance program for CLL. To view more information or manage your account, log in to FundFinder.
New LLS Patient Financial Assistance Program
Now open! The Leukemia & Lymphoma Society has a new Patient Financial Assistance program for Blood Cancer patients in active treatment. Learn more about this new assistance program.
Do you shop at Amazon?
Please use smile.amazon.comfor your shopping and a percentage of your purchases today and going forward will be donated to the CLL Society when you select us as your preferred charity. It costs you nothing and helps us.
CLL Society Sponsored Support Group Meetings Coming Up!
Northeast Ohio CLL Patient Support Group – August 27 @ 7:00 pm
New Orleans and Surrounding Areas CLL Support Group – August 28 @ 6:30 pm
Rochester NY CLL Support Group – August 28 @ 7:00 pm
Boston CLL Patient Support Group – August 31 @ 1:00 pm
San Diego CLL Society Support and Education Meeting – September 4 @ 4:00 pm
New York City CLL Support Group – September 8 @ 3:00 pm
SPECIAL ANNOUNCEMENT: The Washington DC, Western North Carolina, and Oberlin, OH CLL Support Groups will not be meeting in August.
Visit our website for the most up-to-date information on all CLL Society support group meetings.
Lymphoma Research Foundation Meetings
Wednesday, September 4, 2019 from 6:00 PM – 8:30 PM in St. Louis, MO
The Lymphoma Research Foundation invites you to attend a FREE program: Ask the Doctor About Lymphoma: Updates on Lymphoma and Treatment Options at the Embassy Suites by Hilton St. Louis Downtown featuring Neha Mehta-Shah, MD from Washington University School of Medicine in St. Louis. Find out more information and register here.
Leukemia & Lymphoma Society Meetings
Leukemia and Lymphoma Society – Tucker – Family Support Group – September 3 @ 7:00 pm
The CLL Information & Support Group of Rockland County NY – September 5 @ 7:00 pm
Saturday, September 7th from 9:00 AM – 3:00 PM in Atlanta, GA
LLS invites you to attend Georgia Blood Cancer Conference being held at The Renaissance Atlanta Waverly Hotel. This event is free but registration is required. Find out more information and register here.
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