ACCRF Summer Update - August 2023

Summer Research Conferences

ACCRF Research Conference 2023: Advances in ACC Translational Research

On June 15-16 we hosted the ACCRF Research Conference 2023: Advances in ACC Translational Research. Over 2 days in Boston and virtually, more than 80 oncologists and scientists from around the world came together to share data, research, and insights into the future of ACC treatments. A full conference agenda can be found here.


The conference facilitated many exciting discussions and fostered new collaborations among researchers who attended. Some key takeaways from the conference include:


  • Presentation of preclinical screening results of a new drug combination of NOTCH and CDK4/6 inhibitors was met with excitement and may lead to a new clinical trial before year-end.

  • Two biotech companies presented promising preclinical data from ACCRF models on anti-tumor activity of novel, small molecule inhibitors targeting MYB. Related clinical trials may open in 2024.

  • Drugs that target tumor cell surface proteins – such as antibody drug conjugates (ADCs), radioligands, and CARTs – represent a new approach to treating ACC, with several new trials open already or expected to open in the coming year.

American Society of Clinical Oncology

This June, ACCRF hosted our first-ever patient advocacy booth at the annual meeting in Chicago of the American Society of Clinical Oncology (ASCO). One of the largest cancer research conferences in the world, ASCO provided ACCRF with unparalleled opportunities to connect with global leaders in cancer research and patient advocacy, and to expand our network of dedicated professionals working towards a cure for ACC. Some of the most relevant presentations and posters, all from ACCRF grantees, included:

  • A clinical trial of Pembrolizumab and Lenvatinib at Memorial Sloan Kettering (New York, NY, USA) reported that only 1 of 17 ACC patients (6%) had a partial response (30% or more tumor shrinkage), although 13 patients (76%) had some tumor shrinkage. The combination of PD-1 and VEGFR inhibitors did not show more activity than seen previously with Lenvatinib alone. Click here to read the abstract..

  • A clinical trial of Axitinib and Avelumab at MD Anderson (Houston, TX, USA) previously reported partial responses in 5 of 28 ACC patients (18%). At ASCO, further analysis of the combination of PDL1 and VEGFR inhibitors demonstrated that ACC patients in the more aggressive ACC-I subset derived less benefit than those in the the less aggressive ACC-II subset. Click here to read the abstract.

  • A clinical trial of Lu-PSMA-I&T radioligand therapy at Radboud University (Nijmegen, Netherlands) reported that 3 of 10 ACC patients (30%) had stable disease but that none had a partial response. Further study is needed to assess whether higher dosing might be more effective. Click here to read abstract.

New Research Articles

We are proud to support many oncologists in their ongoing work towards new treatments and a cure for ACC. The ACCRF research network continues to facilitate cutting-edge research and clinical trials that advance our understanding of the disease. Below are two recent research publications (with ACCRF grantee authors in parentheses):

  • Spatial Immunoprofiling of Adenoid Cystic Carcinoma Reveals B7-H4 Is a Therapeutic Target for Aggressive Tumors (Renata Ferrarotto, Yoshitsugu Mitani, and Adel El-Naggar) - This work represents a collaboration between ACCRF, ACCRF grantees at MD Anderson and AstraZeneca, a large pharmaceutical company working to develop a B7-H4-directed therapy. The authors used multiple methods to confirm high levels of the cell surface protein B7-H4 in ACC-I type tumors. Importantly, treatment of two, B7-H4-high/ACC-I type preclinical models with AZD8205 (a B7-H4 ADC consisting of an antibody that binds B7-H4 connected to a topoisomerase inhibitor drug) led to significant tumor regressions and in some cases a complete response. A clinical trial testing a different B7-H4 antibody drug conjugate is currently enrolling ACC patients, as listed on our Open Studies webpage.

These and other important research papers are all listed on our Published Articles webpage.


Save the Date: Fall Webinar 2023

Please Join us Saturday October 14 at 12pm ET for our next Patient Webinar sharing highlights from ASCO and the ACCRF research conference, and exploring Antibody Drug Conjugate therapies in ACC. Co-Founder and Executive Director Jeff Kaufman and Director of Research Nicole Spardy Burr, PhD will present on the latest updates and answer questions submitted by participants. A formal invitation will follow.

As always, you can view all past webinars in our Patient Webinar Archive.

6th Annual Brave Like Gabe 5K

On Saturday September 9, 2023 hundreds of people will come together in St. Paul, MN and cities across the country to raise money for ACC research by running in the 6th Annual Brave Like Gabe 5k. ACCRF will once again be partnering with Brave Like Gabe to support the critical work of finding effective treatments and a cure for ACC. Pop-up races will take place in the following cities across the USA:

  • Atlanta, Georgia
  • Bend, Oregon
  • Denver / Boulder, Colorado
  • Northampton, Massachusetts
  • Portland, Oregon
  • Omaha, Nebraska
  • Seattle, Washington

ACCRF Co-founders Jeff and Marnie Kaufman will be attending the St. Paul, MN, and Northampton, MA, races, respectively. If you'll be at either of those races, please let us know at [email protected]. We'd love to see you there!

Fundraiser Spotlights

Thank you to Mike Meldrum who raised over $6,000 in support of ACC research for ACCRF this summer. Mike hosted the 1st Annual Mike Meldrum Associates Charity Golf Outing on June 10 and generously selected ACCRF as a recipient of the event's proceeds. A long-time philanthropist, Mike believes strongly in supporting rare cancer research: "finding a cure for ACC is a cause that's very close to my heart. We hosted the outing in honor of my late sister-in-law, Katie Meldrum, and I wanted to support the great work ACCRF continues to do to get us closer to that goal."

Thank you to Corinne Emerick who raised over $4,000 in support of ACCRF by organizing The Winchester Boat Club's Ladies Night event "Miami Nights". Corinne's efforts not only support ACCRF's ongoing research but continue to raise awareness of ACC. "ACC research and supporting ACCRF is important to me because this disease has touched the life of my friend and her family. I also have the vantage point of being married to someone who spends everyday caring for people with this disease, as well as other life threatening cancers that have a major impact on a patient's quality of life."

ACC Physicians List

Choosing the right doctor is a crucial decision. However, finding doctors experienced in treating ACC can be challenging. In order to help ACC patients make an informed decision in selecting doctors, ACCRF offers an ACC Physicians List of doctors who have treated ACC patients.


Throughout 2023 we will be working to update the physicians list to ensure that the information provided is as current and accurate as possible. Please email us at [email protected] if any of the following apply:

  • You feel your doctor is knowledgeable about ACC and should be added to the list
  • Your doctor on the list has retired
  • Your doctor on the list has moved away from where s/he is listed


Your guidance will ease the path for future ACC patients. We are particularly interested in countries and regions with relatively few available physicians listed.


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