Never stifle a cancer patient’s voice
Never ignore a question
Let our voices be strong
When CLL / SLL patients are newly diagnosed, their immediate questions are big, daunting questions of life and death.
But later, more specific, pointed questions move to the forefront, such as: Where do I begin to secure the best possible care for my CLL? What treatments are available? Do they work? Who is qualified to credibly guide me? That is where hope begins. How do we know this? We’ve lived it.
When Brian was diagnosed in 2005, there was no one-stop-shop to find reliable physician-curated up-to-date patient-friendly information on the latest CLL research, but we suspected there must be kindred souls out there.
As we launched the singular voice of Brian’s blog, endless unanswered questions and immeasurable patient needs became unearthed. At first, we had simply wanted the best possible care for Brian’s CLL. But as we witnessed the need, we became determined to create a non-profit that would function as a conduit for critical support and the best, most credible, cutting-edge treatment information for all CLL patients and their caregivers, so that one wouldn’t need to be a doctor to get the best possible care. Our little 501(c)(3) was established late in 2013 from our kitchen table with the money we loaned it, and we set about giving volume to the questions and concerns of CLL patients and their caregivers.
2013 was a banner year! New treatments were quickly improving patient outcomes, confirming that the biology of CLL had been cracked. We committed to following the science!
We launched the CLL Society website in a flurry of new writing and borrowing from Brian’s blog. With shameless audacity we registered as press to attend the major blood cancer conferences where we recorded video interviews with CLL experts, then dutifully unpacked the content to make the information understandable and helpful to patients and caregivers. We searched and selected the most important abstracts, published research, and explained its relevance in patient friendly terms.
Over the ensuing years, moving toward 2020, CLL Society put down roots deep into the CLL patient and caregiver community and grew our programs and services in response to our patients’ expressed needs.
Our patient surveys blossomed into published research presented at the major conferences, letting the professional community know what really matters to their CLL patients. When the COVID-19 pandemic posed a threat to our immune-suppressed community, CLL Society was ahead of the curve, moving all meetings, webinars, forums, and support groups to virtual settings and emphasizing the importance of wearing masks and social distancing long before others recognized the importance.
Today, the voice of CLL Society is taken seriously by the professional hematology community.
Next year, we will fund young researchers to help find answers to unsolved problems in CLL, such as how to improve our compromised immunity. At the same time, we will build the next generation of CLL physician/scientists.
Thank you to the early and still-giving generous individual donors who saw CLL Society’s potential, and to the expert medical community who welcomed and supported CLL Society from day one, recognizing that we were fulfilling huge unmet needs for their patients.
Thank you to the pharmaceutical industry who supported our nascent charity’s programs and services.
Thank you to our fellow CLL patients and caregivers who stepped up and volunteered to give forward by helping to establish and lead almost 40 CLL-specific support groups across the USA and Canada. And thank you to the patients and caregivers who take part in our support groups, completing our surveys and offering the kindness, knowledge, and support that only a real live CLL patient can believably share with another.
Help us to connect with and support those who don’t yet know us, so that everyone enjoys the benefit of expert care, such as those in rural locations, those in communities of color, and other underrepresented groups, so that we can help derail CLL from shortening anyone’s life.
Thank you to our strong and committed Board of Directors, Medical Advisory Board, Expert Medical Council, Patient Advisory Board, Industry Advisory Council and CLL Society Staff.
None of this would be possible without you.
Let’s revisit our goals: We wanted the best possible care for Brian’s CLL, and we founded CLL Society because we also wanted every CLL patient and caregiver to be able to access that same critical support and cutting-edge treatment information to secure their own best care.
Both dreams have come true.
CLL Society is rock-solid and invested in your long life.
Smart Patients Get Smart Care.™
MDCM (retired), MSEd
When appropriate, the CLL Society will be posting updates and background information on the present Coronavirus pandemic focusing on reliable primary sources of information and avoiding most of the news that is not directly from reliable medical experts or government and world health agencies.