ACCRF Logo Website
ACCRF Update
December 2013

Year End Letter

Dear Friends,


What a remarkable year you helped create! 2013 has seen so many encouraging developments -  in laboratories and clinics - that will accelerate the development of better treatments and a cure for ACC.


And it is all thanks to your ongoing support!

 Here is a small sampling of some key milestones:


  • Encouraging clinical trials - The results of 4 clinical trials for ACC patients were announced in June. These studies had more patients, more rapid accrual and more promising results than we have seen in past clinical trials.
  • Pivotal DNA sequencing studies - Two studies from researchers at the Sanger Institute, MD Anderson and Memorial Sloan-Kettering were published in the spring. We learned that ACC tumors have "quiet genomes" with few alterations, hopefully meaning that the tumors will be simpler to target.
  • Creating a roadmap - ACCRF published its initial Research Agenda in 2006 to help guide researchers to the most fruitful projects. Thankfully, many of the initial objectives have been accomplished, necessitating a refreshed document. ACCRF's Scientific Advisory Board and network of researchers all contributed in 2013 to drafting The Landscape of ACC Research as a new roadmap.
  • Ground-breaking scientific meeting - ACCRF convened the first-ever conference that brought together ACC researchers and experts on MYB, the gene that appears to be a cause of most ACC tumors. ACCRF already has funded collaborations that grew out of the meeting to learn how MYB works and to discover more promising drugs.

The generosity of donors like you has made this possible!


Looking forward, 2014 should be filled with excitement as well. Brilliant researchers with cutting-edge technologies are hard at work searching for the Achilles' heel of ACC. In the coming year, we may reasonably expect to learn of new molecular targets, new medicines and new clinical trials that can improve the outlook for ACC patients.


Of course, amidst all the promise, the year also has been very painful for many in the ACC community. Family members and friends continue to undergo difficult treatments and too many patients have been taken from us by this horrible disease


As a reminder, Our Circle of Sustenance donors have committed to covering all administrative expenses, ensuring that 100% of your donation will fund ACC research projects.


We have a great plan of action and a great community to carry it out. We look forward to walking side by side with you on our journey of hope!


Warm wishes for the holiday season,


The ACCRF Board of Directors


Jeff Kaufman, Executive Director                                  Marnie Kaufman

Tom DiLenge                                                                    Douglas Meyer

Kara Gelb                                                                          Ralph Mollis

Patient Educational Materials

The age of genomic medicine is just beginning. And it requires healthcare professionals to learn a great deal of new information about science and how to apply it in the clinic. If patients wish to be active participants in their own care, they need to educate themselves as well. Non-technical familiarity with basic concepts in cancer genomics may help patients to purposefully guide their own treatment decisions.


At the bottom of ACCRF's Additional Resources webpage, we have added links to three resources that introduce patients to basic concepts in cancer and genomics. Improved understanding can boost confidence in exploring options and, hopefully, lead to better outcomes for patients.

Clinical Trials Update
The number, sizes and quality of clinical trials have picked up recently, providing the ACC patient community with quick, clear answers about the effectiveness of many new drugs, some of which appear promising. Over the past year, several phase II studies for ACC patients have completed enrollment: dovitinib (University of Virginia and Seoul National University), vorinostat (Karmanos Institute), sorafenib (Istituto Nazionale di Tumori and the Christie Hospital), axitinib (Memorial Sloan-Kettering), MK-2206 (Memorial Sloan-Kettering) and dasatinib (University of Chicago consortium). Most of these studies have published preliminary results that are available on ACCRF's Past Studies webpage.


So what clinical trials are still recruiting ACC patients? ACCRF's Current Studies webpage provides a selected listing of clinical trials for ACC patients with progressive disease. At the moment, the only phase II study specifically for ACC patients is testing dovitinib (Ontario Clinical Oncology Group). Another study for patients with any salivary gland cancer is testing eribulin (University of Washington).


Phase II clinical trials are usually for patients with particular tumor types like ACC or salivary gland cancer. The Current Studies webpage also lists phase I studies that are open to patients with multiple tumor types, including ACC. The phase I studies are selected based on their testing of drugs that inhibit targets believed to be particularly important in most ACC tumors (currently FGFR and IGF-1R).


ACCRF seeks to keep the ACC community informed about promising clinical trials. So watch for future updates!