Winter Research Update

ACCRF Research Update - February 2026

Fortifying Our Leadership for a New Decade of Success

For twenty years, ACCRF has been a driving force in ACC research. Uniting patients and researchers around the world, we have built a global community and transformed the research landscape to bring patients to the threshold of life-changing therapies. 2025 was a banner year of scientific breakthroughs, and we are now closer than ever to effective treatments for ACC patients. As we enter our third decade, ACCRF is capitalizing on this momentum by redoubling our ongoing research efforts while pursuing strategic new areas for discovery and development.

Central to these efforts, Dr. Nicole (Nikki) Spardy Burr, PhD, has been named ACCRF Executive Director, overseeing all research and administrative activities. Dr. Spardy Burr joined the foundation in 2016 and has served as Director of Research for seven years, guiding scientific strategy and managing daily research operations. As the face of ACCRF’s research efforts, she has presented hard science at global research meetings and has educated patients to help them on their treatment journeys.

“We are fortunate and deeply appreciative that Nikki has committed herself with such devotion to the ACC community,” said outgoing Executive Director and Co-Founder Jeff Kaufman. “Quite simply, she has the scientific rigor, extensive experience, and caring nature to lead ACCRF with skill and energy.”

Jeff Kaufman remains as Chair of the ACCRF Board of Directors, managing governance and oversight of the foundation’s activities. He will shift his focus from daily operational activities toward strategic initiatives, including industry collaborations and patient education.

Of the transition to Executive Director, Dr. Spardy Burr said, “I want to thank Marnie and Jeff for building ACCRF into the galvanizing force it is, and for partnering with me for a decade to make dramatic progress. We are reinvigorating ACCRF from an incredibly strong base, and I couldn’t be more enthusiastic about the coming opportunities to help our patients.”

You can read more about ACCRF’s leadership along with an interview with Dr. Spardy Burr.

ACCRF Leadership (from left): Dr. Nicole Spardy Burr, PhD, Executive Director; Jeffrey Kaufman, Co-Founder and Board Chair; Marnie Kaufman, Co-Founder and Board Director; Reed Motz, Director of Development and Communications

2025 ACCRF Impact Report

The 2025 ACCRF Impact Report is now available! This report highlights the foundation's achievements over the past year as well as our 20th anniversary and the advances made in ACC research and treatments over the past two decades.

We are incredibly grateful to the many members of our research and patient communities whose hard work, care, and dedication made 2025 a watershed year for ACC research and ACCRF.

We hope this report reflects their remarkable efforts and provides a renewed energy to continue building toward new treatments and a cure in 2026!

Read the Full Report Here

Please join us Saturday, April 11 from 11am-4pm ET in Needham, MA, USA for a day of community, connection, and education at the 2026 ACCRF Patient Meeting.

This in-person event provides a forum for ACC patients to meet, discuss their journeys, and hear about the latest in ACC research and treatment options.

The event will include:

Remarks from Co-Founders Marnie Kaufman and Jeff Kaufman
Updates from Executive Director Nicole Spardy Burr, PhD
Patient roundtable and lunch
A special presentation by ACCRF grantee Dr. Glenn Hanna (Dana Farber Cancer Institute) discussing clinical trials and current treatment options

Please Note: This is an in-person-only event with no virtual participation. Dr. Hanna’s presentation will be recorded and sent out as a webinar following the Patient Meeting. You do not need to register for the meeting to receive the webinar recording.

To learn more and register, please visit the event page.

We hope to see you there!

Research Updates

We are proud to support many oncologists in their ongoing work seeking 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 their physicians. Listed studies below reflect any changes made since the previous email update.

Studies that have been closed or paused:

Ivonescimab: this VEGFR and PD1 inhibitor study is no longer enrolling ACC patients.

Published Articles

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

Surgical resection for pulmonary metastases from head and neck adenoid cystic carcinoma: a propensity-matched survival analysis: ACCRF grantee Dr. Xiaohong Chen (Beijing Tongren Hospital) published a study comparing ACC patients who had surgery to remove their lung tumors with ACC patients who received other treatments, such as radiation or chemotherapy. The study found that after 5 years, 95.75% of patients who had lung surgery were still alive, compared with 82.9% of patients who received non-surgical treatment. The 5-year progression-free survival (the time before the cancer grows or spreads again) was 86.93% for the surgery group and 73.86% for the non-surgery group. The authors noted that the patients who may benefit the most from lung surgery are those who: 1) had a long time between their first ACC diagnosis and the development of distant metastases (e.g. more than 36 months), 2) have fewer lung metastases—especially if there is only one, and 3) do not have pleural effusion (a buildup of fluid around the lungs).

The Use of Proton Radiation in the Management of Adenoid Cystic Carcinoma: ACCRF grantees Drs. Alan Ho and Richard J. Wong (Memorial Sloan Kettering Cancer Center) describe the clinical course of 106 ACC patients treated with definitive or adjuvant proton therapy from 2012 to 2023 at Memorial Sloan Kettering. Locoregional control (no tumors near the primary site) at 5 years was 93% for adjuvant (post-surgery) and 74% for definitive (radiation-only) treatment. Five-year progression free survival was 54% for adjuvant and 29% for definitive treatment. The most common toxicities were dermatitis and mucositis (skin and digestive tract inflammation), both generally mild.

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 recently awarded the following grants:

Renata Ferrarotto (MD Anderson Cancer Center): Phase II clinical trial evaluating AstraZeneca's B7-H4 ADC, puxitatug samrotecan (P-Sam), in recurrent/metastatic ACC. This trial is not yet open for recruitment.

Piero Dalerba (Hackensack Meridian School of Medicine): Mechanistic significance and therapeutic eradication of ductal and myoepithelial lineages in human Adenoid Cystic Carcinomas (ACCs).

Carla van Herpen (Radboud University Medical Center): [68Ga]Ga-OncoFAP PET imaging in recurrent and/or metastatic salivary gland cancer.

Amanda Swain (Institute of Cancer Research): Generating and using genetic preclinical models to identify novel therapeutic options for patients with adenoid cystic carcinoma.

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

Year-End Fundraising Update

Thank you so much to everyone who participated in the ACCRF 20th Anniversary Matching Challenge. Because of you, not only did we meet our $200,000 goal, but you helped make this the most successful year-end fundraiser in ACCRF history!

As we continue to build on the groundbreaking work of the past 20 years and the remarkable advances of 2025, your generosity provides scientists and clinicians with the resources necessary to find new, effective treatments for ACC.

We are so grateful to have you as a partner in these efforts.

We also extend our sincere thanks to Diana and Ogie Yanakiev and the ACCRF Board of Directors for creating this year's matching fund, and to Adenoid Cystic Carcinoma Organization International (ACCOI) for their generous gift which helped us reach our final goal!

ACC Physicians List

ACCRF is pleased to provide the ACC Physicians List, containing up-to-date information for over 850 physicians globally with experience treating ACC.

This fully searchable database allows patients to locate physicians by name, location, institution, or field of expertise to help inform their decisions in selecting doctors. 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 info@accrf.org 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.

ACCRF’s work is only possible through the generous support of community members like you. With increased uncertainty in the research funding landscape, our efforts to discover new, better treatments for ACC are more critical than ever. Please give today and help us continue to advance groundbreaking research that directly impacts the lives of patients.

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