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ACCRF Update


Mybconf4th International Conference on Malignant Salivary Gland Tumors
On October 19-20, 2017, researchers from around the globe came together to participate in the 4th International Conference on Malignant Salivary Gland Tumors, hosted by the University of Florida in Gainesville, FL and sponsored by ACCRF, the National Institute of Dental and Craniofacial Research (NIDCR), the Moffitt Cancer Center, the University of Florida and the University of Miami. The  agenda  focused heavily on ACC and the MYB gene that drives most ACC tumors. Distinguished speakers from Australia, Italy, Sweden, the UK and the US sparked great discussions and new collaborations.
Many ACCRF grantees were in attendance, sharing new and unpublished data. Some ACC research highlights included:
  • Progress made on a MYB-NFIB fusion-positive ACC cell line and MYB-driven mouse model of ACC.
  • Understanding how deregulated MYB activity may affect gene expression and the DNA damage response.
  • Update on the MYB vaccine entering a phase I clinical trial in late 2017 for colon cancer and ACC patients.
Basic research is the engine that generates promising ideas for clinical trials. The ACCRF research network has done a wonderful job in filling the pipeline with promising ideas and, based on this conference, it's clear that even more ideas are on the horizon.

clinicaltrialsClinical Trials Update:
ACC patients with recurrent and progressing disease often turn to clinical trials given the lack of approved, effective systemic therapies. ACCRF maintains a  list of clinical trials for patients to consider in consultation with their physicians. In the past few months there has been a great deal of activity:
  • The phase II study of pembrolizumab (PD-1 inhibitor) and vorinostat (HDAC inhibitor) completed enrollment in Seattle, USA.
  • The phase II study of axitinib (multi-kinase inhibitor) completed enrollment in Seoul, Korea. This clinical trial is the first placebo-controlled study in ACC.
  • Phase II studies of immunotherapies nivolumab (PD-1 inhibitor) and ipilumumab (CTLA-4 inhibitor) in combination opened at Memorial Sloan Kettering in New York, USA, and Northwestern in Chicago, USA.
  • A phase II study of chidamide (HDAC inihibitor) opened in Beijing, China.
  • An imaging study of PSMA-PET opened in Nijmegen, Netherlands.
  • A phase I study of a MYB vaccine in combination with BGB-A317 (PD-1 inhibitor) will open in December in Melbourne, Australia.
  • A phase I study of APG-115 (MDM2 inhibitor) opened in San Antonio, USA.
ACCRF will continue to monitor developments and keep the patient community informed about clinical trials of potential interest.

patienteventsPatient Events
The Pash family from New Jersey, USA, endured a 200-mile "Ragnar Relay" race from Saratoga Springs to Lake Placid, New York, USA, to raise funds for ACC research. The overnight running and sore legs were worth it as supporters donated more than $60,000 to ACCRF! ACC patient Bob Pash was amazed and thrilled that his wife Susan and their kids organized a racing team to run in his honor.

ACC patient Carol Rosenberg and her husband Jonathan organized a refined charitable evening, Rare Wines Curing Rare Cancer, in their hometown of New York, New York, USA.  Lovers of fine vintages shared a tasty meal paired with spectacular wines while friends donated nearly $40,000 for ACCRF.  A fine toast to everyone's health!
Nezbit , based in Atlanta, GA is an alternate rock tribute band covering the greatest songs from all generations. A little bit rock and a whole lot of roll, you're not going to want to miss this. Drummer Alex Massie is an ACC survivor/fighter and all proceeds will be donated to ACCRF.  Come join the fun  at Smiths Old Bar on January 13 at 8pm.

The "3 Amigos" will be pounding the pavement in the Disney Marathon on January 7, 2018, in Orlando Florida. One of the "amigos" is Douglas Meyer, a member of the ACCRF Board of Directors who knows how to keep things running! They are looking for friendly support.

Would you like to  hold your own fundraiser to 
ACCelerate the CURE?
ACCRF is here to help you every step of the way. 

Please contact Marnie Kaufman at  or 781-248-9699. We look forward to working together!
tumordonationsTumor Donations:
There are many ways in which ACC patients may support research. Not everyone can make a financial donation or enroll in a clinical trial. However, any ACC patient with an upcoming surgery may consider donating a portion of the tumor to research. It is free and won't interfere with the treatment plan. And the tumor specimen will permit ACC researchers to more rapidly understand the disease and come up with new therapies.
On our  Tumor Donations webpage, ACCRF describes various ways in which patients may donate their tumors for research. Hospitals such as MD Anderson, Mass General and the University of Virginia collect specimens from surgeries within their own institutions. 

A new route for donating tumors is offered by The nonprofit permits patients to direct the tumor specimens to researchers working at outside institutions working on developing disease models. Currently, is directing tumor specimens to the Broad Institute of Harvard and MIT to develop cell lines (tumors that grow in plastic dishes for research).
If you are an ACC patient with an upcoming surgery, please consider making a tumor donation. It will be an enormous contribution to finding better treatments!   
 Please Help Support ACC Research