ACCRF Latest Accomplishment

Jeff Kaufman and the ACCRF recently published a document that is available online, which is a Guide to Sysemic Therapy for ACC. This indepth document reviews the past history of clinical trials for ACC with explanations about the poor outcomes that were reported, but it also reports the promising developments  that have recently taken place in research, as well as the upcoming events and plans that should be taking place in the near future. In this report an upcoming clinical trial has been announced, with this trial being so much different than any other up to this point. For the very first time in history this trial is based upon solid laboratory research discoveries from multiple laboratories and researchers, as well as testing conducted using mouse models for a unique drug that specifically targets several highly suspect, identified molecular targets. A complete explanation of the research and the initial plans for the clinical trial is outlined in this document. To view this document and learn more about our partners go to

Founder’s Story of ACCRF

Marnie Kaufmann was 38 years old, with four children under the age of 10, when she received her ACC diagnosis. Frustrated at the lack of ongoing ACC research, Marnie and her husband Jeff Kaufman formed ACCRF in 2005. Since then, following the innovative Guiding Principals, executing carefully the Research Strategy and through the generosity of supporters, our partners at ACCRF have been making incredible progress with ACC research.


ACCRF has a group of officials and volunteers who coordinate ACC research projects in several countries. The Scientific Advisory Board (SAB) convens periodically to approved projects which are subsequently confirmed by the Board of Directors.

Since 2005 ACCRF has raised over $5 million to further its mission of developing improved therapies and curing ACC. ACCRF that started with the core support of Kaufmann’s family and friends has blossomed into a global effort with the ability to attract distinguished and discerning philanthropists such as Irwin and Joan Jacobs of La Jolla, CA. Dr. Jacobs was the founder, CEO and Chairman of telecommunications firm Qualcomm.

Research Strategy

Because ACC is a rare cancer, ACC researchers face a complex array of challenges - very limited funding, minimal research focus and inadequate facilities. Private funding, scientific experts, clinical oncologists, and coordinated action are necessary to overcome these challenges. ACCRF implements a strategy focus on the following three project categories:

· Specimens & Models

· Basic Research

· Translational Research

Research Progress

ACCRF coordinated researchers in United States, the United Kingdom, China and Sweden. Some of the projects are listed below:

Project Accomplished

Discovered a fusion gene in ACC by Dr. Goran Stenman (Sahlgrenska Academy, Sweden). The data indicate that the MYB-NFIB fusion is a hallmark of ACC and deregulation of the expression of MYB and its target genes is a key oncogenic event in the pathogenesis of ACC. The findings also suggest that the gain-of-function activity from the MYB-NFIB fusion is a therapeutic target candidate.

Developed valid ACC cell lines without contamination by Dr. El-Nagger (MD Anderson Cancer Center).

Studied methylation of ACC specimens by Dr. Patrick Ha (John Hopkins) to determine which genes are turned on or off as the disease progresses.

Studied the phosphorylation status of proteins in ACC by the collaboration of U. Of Virginia, Massachusetts General Hospital and Cell Signaling Technology. Dr. Frierson (U. of Virginia) identified some proteins that are particularly active which researchers can disrupt the cell signaling pathways in ACC.

Studied perineural invasion in ACC patients with high resolution MRI at UCLA. A better understanding of the perineural invasion process will improve the diagnosis, treatment and outcome for ACC patients.

Continuous Projects

Continue to bank and share ACC tumor specimens at U. of Virginia, MD Anderson Cancer Center, and NIDCR.

Continue to screen clinically-relevant compounds on ACC cell lines at the Massachusetts General Hospital (MGH).

Continue to screen chemical libraries on ACC cell lines at NIH Chemical Genomics Center (NCGC).

Continue to screen most promising compounds on xenograft models at the South Texas Accelerated Research Therapeutics (START).

Continue to coordinate multiple cancer institutions and National Institute of Health to accelerate ACC clinical trials.

Newly Supported Projects

Dr. Goran Stenman (Sahlgrenska Academy, Sweden) will pursue his current line of the fusion gene research, its variants and functional studies to understand the signal pathway involved.

Dr. El-Nagger (MD Anderson) plans to determine the incident of translocation variants in a large cohort of ACC samples and compare their genomic characteristics.

Dr. Futreal (Sanger Institute) plans to sequence the exome and transciptome of a set of ACC sample, seeking additional genomic alternations and targets of interest in ACC.

Dr. Wong (Dana-Faber Cancer Institute) plans to create an inducible bitransgenic mouse model with the fusion gene; Dr. Gigi Lozano (MD Anderson) and Dr. Inder Verma (Salk Institute) also plan to develop mouse models of ACC using alternative approaches.


The ACCOI is so proud to consider ourselves as being supporters of ACCRF and we are in collaboration with all they do. We consider them to be the by far the most historically significant organization in the entire history of ACC. We share their hope, anticipation and optimism as we have observed continuous, significant progress being made in developing a cure for ACC. 

For more information on ACCRF or to make an on-line donation, please visit the ACCRF website at