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May 2016

Upcoming Events
The weekend of May 14-15 promises to be exciting and inspiring for the ACC patient community in the northeastern United States. Three events will keep patients and their loved ones active, well-fed and building relationships.
Saturday, May 14th (11:30am - 8pm) @ Windham Golf Club (Windham, NH)
10th Annual Friends of ACCRF Event - Food, music and silent and live auctions
Saturday, May 14th (7pm - 11pm) @ Moseley's (Dedham, MA)

ACCRF Survivor Meeting 
Sunday, May 15th (11am - 3pm) @ Needham Center at the Heights, (300 Hillside Avenue Needham, MA 02494)
We hope you'll join us for all the fun and friends!

For more information please contact 

ACCRF Hires Scientific Program Officer

Dr. Nicole Spardy Burr recently joined ACCRF as the foundation's first Scientific Program Officer. She will guide and manage ACCRF's research agenda, ensuring that our network of ACC researchers makes rapid progress in finding improved treatments and a cure for ACC. In addition, she will help explain scientific advances to the patient community, highlighting potential treatment implications.
Dr. Spardy Burr earned a Ph.D. in Biochemistry and Molecular Genetics from the University of Pittsburgh. As a research scientist at the Dana-Farber Cancer Institute in Boston, MA, she worked on identifying genetic vulnerabilities as therapeutic targets in cancer cells.  She has served as a science writer for prominent journals as well as her own wellness blog.  
ACCRF is thrilled to welcome Dr. Spardy Burr to our community! She  will be on hand to meet patients attending the Friends of ACCRF Fundraiser and the ACCRF Survivor Meeting during the weekend of May 14-15.

Clinical Trial Developments
We recently updated our Current Studies webpage that lists clinical trials for ACC patients with progressive disease to consider. The most significant change was the return of a previously listed clinical trial of pembrolizumab (Keytruda), an immunotherapy that targets PD-1; the salivary gland cohort has re-opened and no longer requires PDL1 expression for ACC patients.
Recent reports indicate that a significant subset of ACC patients has tumors with alterations in the NOTCH pathway, and that these tumors may act more aggressively. For patients whose tumors have been profiled and found to harbor NOTCH alterations, we have updated the list of clinical trials of NOTCH inhibitors. Bristol Myers no longer is developing its NOTCH inhibitor so two studies have been removed. Meanwhile, a study of a NOTCH inhibitor from Eli Lilly has been added.

Recent Publications by Grantees
ACCRF's network of researchers has really hit its stride! Our grantees have been publishing a remarkable series of articles that are clarifying the underlying biology of ACC and narrowing down the Achilles' heels of the disease. We have updated our grantees' papers on our Published Articles webpage.
From the amazing work of ACCRF grantees, we have known for years that an over-active MYB gene is the hallmark of most ACC tumors. At the end of last year, ACCRF grantees fingered the MYBL1 gene, a "cousin" of MYB, as implicated in about 15% of cases. And early this year, a seminal piece of research authored by eight ACCRF grantees across six institutions explained the mechanism by which MYB becomes too abundant in ACC tumors. Such collaboration and productivity is not typical in biomedical research; it is the result of ACCRF's concerted effort to build a community of ACC researchers.
We all are fortunate to have attracted such a brilliant and collaborative group of researchers!  

Your support makes this progress possible.

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