ACCRF Update - May 2024

Honoring Shalil Giannone's Contributions to the ACC Community

During a procedure in 2010, a dentist discovered a growth on the roof of Shalil Gianonne's mouth, and what began as a routine visit would soon become an ACC diagnosis and treatment journey that included radiation, surgery, and the creation of an obturator—an artificial palate necessary after her operation.

A year after her surgery, Shalil heard about an ACCRF patient meeting in Boston and decided to attend. At the meeting she immediately felt a sense of connection and community she hadn’t experienced since being diagnosed.

A consummate optimist never content to stand on the sidelines, Shalil jumped at the opportunity to help further build this sense of community by supporting her fellow patients. Through countless volunteer hours, Shalil Giannone has spread the word about ACCRF, planned patient gatherings, and provided hope for other people living with ACC.

In her own words, “I am always amazed coming away from these interactions and hope I can give help to those along this journey as much as I receive from each and every person that attends.

And she knows first-hand the importance of staying informed, connected, and hopeful; Shalil is now part of an ACCRF-pioneered clinical trail for lung metastases that she learned of through the foundation.

With unfailing compassion, Shalil continues to ensure that ACC patients—from the newly diagnosed to those who have been living with the disease for decades—feel welcomed, supported, and less alone on their journeys.

On behalf of these individuals and everyone at ACCRF, we extend our sincere thanks and gratitude for all of Shalil’s wonderful work!

You can learn more about all of ACCRF's Patient Champions here.

Announcing the ACC Second Opinions Resource

ACC is a rare disease with many variations and patient-specific peculiarities that are handled differently across and within medical centers. Therefore, second (or third) opinions may be worthwhile for patients trying to gain confidence in their treatment plans, especially for unusual or complex cases. Patients should always feel empowered and comfortable in asking for additional opinions.

In support of these efforts, we are pleased to announce the launch of our new ACC Second Opinions resource offering guidance on pursuing second opinions during treatment and a list of physicians and institutions with significant experience in treating specific aspects of ACC.

Most insurance companies cover the cost of second opinions, though patients should check to make sure. It is often up to patients to self-advocate and reach out to physicians, some of whom may be open to offering online consultations. The ACC Physicians List may provide additional options for second opinions that are closer to home.

We hope this new resource will provide more insight for patients considering a second opinion in their treatment journey.

Research Updates

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 the latest updates in clinical trials, research publications from ACCRF grantees, and ACCRF-funded research grants.

Clinical Trial Updates

ACCRF’s Open Studies webpage lists clinical trials that may be appropriate for ACC patients after consulting with their physicians.

Studies that recently opened, restarted, or expanded recruitment:

  • TAK-676: a study of this STING agonist is enrolling recurrent/metastatic ACC patients at Massachusetts General Hospital in Boston.

  • XMT-1660: A study of this B7H4 antibody drug conjugate recently opened at Dana Farber in Boston. It is limited to recurrent/metastatic patients with “ACC-1” tumors that have activating NOTCH alterations, solid histology and/or low p63 expression. 

  • Amivantamab: a study of this EGRF inhibitor recently reopened enrollment for recurrent/metastatic ACC patients after an interim data analysis.

  • KT-253: a study of this MDM2 inhibitor recently started recruiting recurrent/metastatic ACC patients.

Studies that have recently been closed or paused:

  • SGN-B7H4V ADC: this B7H4 antibody drug conjugate study is no longer accepting ACC patients.

Recently Published Articles

Below are the latest in research publications from ACCRF grantees. You can can find these and many others on our Published Articles webpage.

Research Grants Awarded by ACCRF

ACCRF is dedicated to the pursuit and support of the most promising ACC research in the field today. Since founding ACCRF, we have awarded more than $20 million in research grants to individuals working towards new treatments and a cure, rapidly expanding the field of ACC research in the process.

We are proud to have awarded 6 new research grants in 2024:

Dr. Max Wintermark and Dr. Renata Ferrarotto - MD Anderson Cancer Center - Grant to study VEGFR inhibitors in ACC.

Dr. Stephen Doggett and Dr. Drew Moghanaki - Mission Viejo Hospital and UCLA - Pilot grant to study safety and efficacy of brachytherapy in ACC lung metastases.

Dr. Francois-Regis Ferrand - Gustave Roussy Institute -

Pilot grant to to perform a pathological review and multiomic analysis of ACC samples.

Dr. Tony Amelio - H. Lee Moffitt Cancer Center & Research Institute, Inc -

Grant to study the tumor immune landscapes in ACCs of different salivary sites.

Dr. Rajan Gogna - Virginia Commonwealth University School of Medicine -

Pilot grant to study genomic fitness signals in ACC.

Dr. Damian Rieke - Charite Comprehensive Cancer Center - Pilot grant to study novel treatment options and biomarkers for existing immune therapies in advanced ACC.

For a full list of ACC research grants funded by ACCRF, visit our Funded Grants page.

Upcoming Events

Save the Date! This year's annual Brave Like Gabe 5k will be held Saturday, September 28 in St. Paul, MN and at satellite locations across the country. Now in its 7th year, the Brake Like Gabe 5k raises funds and awareness for ACC research. ACCRF is proud to continue our ongoing partnership with this wonderful organization.

If you are interested in hosting a satellite 5k you can contact the BLG foundation and learn more about the event at

We hope you will be able to join us this year for another great 5k!

ACC Physicians List

ACCRF provides a regularly updated ACC Physicians List containing current information for over 850 physicians globally with experience in treating ACC.

The fully searchable database allows patients to locate physicians by name, location, institution, or field of expertise to help inform their decisions in selecting doctors. New features include a link to each doctor’s institutional website, where available, and a link to the National Physicians Index (NPI) listing for each doctor based in the USA which provides current information on practice locations and status.

This list is constantly evolving, and we rely on patient input to ensure that our database is as comprehensive and current as possible.

Please email us at 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.

We encourage patients with advanced, metastatic, or complex cases of ACC to visit our Second Opinions Resource for more information on specialists.


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