April 4, 2016

Friends,

It’s been a busy few weeks.

Last week was a chance to reflect on how far we have come as we marked the end of our first year online. We originally launched our website on March 31, 2015 and are so grateful for all the support and encouragement over the last year.

Our work continues. This week we published our first 2016 issue of The CLL Tribune, and fielded a short survey in our Reader Poll on how we patients and caregivers make decisions about our therapy. I hope to present the results at a symposium at the 2016 European Hematology Association Congress in Copenhagen in June, so I am asking you to please complete it. It takes less than 5 minutes. Many thanks to the 78 folks who have already done so!

Two weeks ago in Anaheim, I spoke in front of more than 550 patients and caregivers on behalf of LLS at their southern Californian Blood Conference. My topic was “How to be your own advocate”. It was a great privilege, in every way, to be able to give such a talk after 10 years of dancing with my CLL.

On April 2^nd, the CLL Society had an active exhibitor’s table sharing CLL information and resources at the LRF Lymphoma Workshop in Manhattan Beach.

Both meetings had super CLL breakout sessions, in Anaheim by Dr. Tanya Siddiqi of City of Hope, and in Manhattan Beach by Dr. Herbert Eradat of UCLA. Thanks to them both for donating their time.

At both meeting we collected signatures for those interested in getting a CLL support group going on the west side of the LA Basin. It you missed the meetings and are interested, please send us an email at support@CLLSociety.org and we will make you aware of our interest survey when it launches.

This week in the 2015 Conference Coverage section of the CLL Society website, we have posted an interesting article written by Dr. Zeev Estrov from MD Anderson Cancer Center describing the abstract they presented at ASH 2015 focused on exploring treatment options to address CLL fatigue. This is an important and until recently an under-researched topic. You can see the summary here.

We are also gathering interest in forming 2 new patient and caregiver support meetings: Charlotte, NC and Tampa FL.

• If you live in Charlotte, NC and are interested, please complete the online survey to indicate your preferences for days and times.
• If you live in Tampa, FL and are interested, please complete the online survey to indicate your preferences for days and times. We look forward to getting started.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society