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December 2012

Dear Friends,


The momentum keeps building! This past year's progress in ACC research was remarkable and, with your continued support, 2013 is shaping up to be even better.


The generosity of the patient community and the deep commitment of our affiliated researchers saw some truly notable achievements in 2012:

  • Novartis Pharmaceuticals opened a third clinical trial of its drug Dovitinib in ACC patients and - thanks to our motivated community - the University of Virginia was able to open, expand and then complete enrollment of its Dovitinib clinical trial after only 8 months (compared to median accrual times of 32 months). Academic and pharmaceutical researchers are realizing how quickly ACCRF's network is able to generate and test high quality concepts to improve treatments.
  • Building off of promising "seed" research spurred by ACCRF, the National Institute of Dental and Craniofacial Research (NIDCR) awarded more than $8 million to salivary gland cancer research in September. The three largest grants are funding ACCRF grantees working on ACC while the other six grants include an ACC component. ACCRF's close collaboration with NIDCR has been extremely constructive and gratifying in coordinating the research that must be done.
  • The roll-out of ACCRF's new website reinforced our ability to serve as a clearinghouse of high quality information for patients and researchers. Whether a patient is looking for a clinical trial or a researcher is looking for a mouse model, they know where to turn.

Despite the great strides, there is still so much to be done. ACCRF must continue the difficult but necessary work of identifying the disease's vulnerabilities and methodically searching for ways to attack them. In addition, the foundation is mobilizing to press forward with two new strategic priorities in the coming year:

  • ACCRF is committing to a program of drug discovery and development to target MYB (the aberrant protein that is presumed to drive most cases of ACC). Our past drug discovery efforts have focused on opportunistically investigating approved and novel drugs that indirectly target MYB through (downstream) molecules impacted by MYB. However, we want to expand our program to directly target MYB, an enormous, high-risk and pivotal undertaking. Initial efforts are under way and a workshop of world MYB experts is being planned.
  • An ACC Patient Registry will help provide patients with progressive disease with greater information about the most appropriate systemic therapy options. The genomics revolution has opened up the possibility of personalized tumor profiling for all cancer patients. ACCRF will catalyze an effort to combine such tumor profiling with patient clinical records to help patients and their doctors optimize their care. And the ACC Patient Registry will create an invaluable database for researchers to determine better treatments for future metastatic patients.

Over the past seven years, ACCRF has turned the field of ACC research from a stagnant backwater to a freshly-tilled farm for budding ideas. We need your financial help to permit the promising seedlings of research to blossom into better outcomes for ACC patients.  


Please consider renewing and increasing your support for the foundation.


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

Tom DiLenge

Kara Gelb

Marnie Abbott Kaufman

Douglas Meyer

Ralph Mollis