ACCRF Update - March 2025

Celebrating 20 Years of Groundbreaking Research

Dear Friends,


December 2025 marks the 20th Anniversary of of the founding of the Adenoid Cystic Carcinoma Research Foundation. Begun in 2005 by Marnie and Jeff Kaufman after Marnie's ACC diagnosis, ACCRF has from the beginning been an organization created by patients, for patients, and driven by the urgency of patients. Over the past 20 years countless patients, researchers, physicians, caretakers, friends, and family members have helped us build an ACC community that supports and educates patients and works to discover new and better treatments.


These efforts have transformed ACC research from a little-studied niche into a vibrant and vital field. ACCRF's work has led to an explosion of knowledge about the basic biology of ACC that is now being translated into promising clinical trials. You can read more about these accomplishments below in our inaugural 2024 Impact Report.


Throughout the year we will be featuring a look back at the strides that have been made in ACC research over the past two decades as well as the individuals who made them possible.


We are immensely proud of what we have achieved so far as a community, and we thank everyone involved for their unwavering partnership. We look forward to celebrating this milestoneand the many exciting breakthroughs to comewith you.

Sincerely,


The ACCRF Team



Jeff Kaufman, Co-Founder and Executive Director

Marnie Kaufman, Co-Founder and Director

Nicole Spardy Burr, PhD, Director of Research

Reed Motz, Development and Communications Manager

2024 Impact Report

The 2024 ACCRF Impact Report is now available! This inaugural report highlights the foundation's achievements over the past year as well as the advances made in ACC research and treatment.


We are incredibly grateful to the many members of our research and patient communities whose hard work, care, and dedication made 2024 an exceptional year for ACC research and ACCRF.


We hope this report offers a reflection of their remarkable efforts and a renewed energy to continue building toward new treatments and a cure in 2025!

Read the Report Here

Please join us Saturday, April 12 from 11am-4pm ET in Needham, MA, USA for a day of community and connection at the 2025 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.

Click Here to Register

The event will include:


  • Remarks from Co-Founders Marnie Kaufman and Executive Director Jeff Kaufman
  • Updates from Director of Research Nicole Spardy Burr, PhD
  • Patient roundtable and lunch
  • A special presentation by ACCRF grantee Dr. Daniel Pelaez of the University of Miami on ACC liquid biopsies


Please Note: This is an in-person-only event with no virtual participation. Dr. Pelaez's presentation will be recorded and made available after the meeting on the ACCRF website.



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



We hope to see you there!

Announcing the 2025 Kara Gelb Memorial Grant Recipient

ACCRF is proud to announce Dr. Renata Ferrarotto of MD Anderson Cancer Center as the recipient of the 2025 Kara Gelb Memorial Grant for her research project "Multicenter Validation of P63 Immunohistochemistry (IHC) as a Prognostic Marker for Adenoid Cystic Carcinoma".



This research explores whether p63 protein levels are associated with overall survival in ACC patients. The project will assess p63 levels using an assay called immunohistochemistry that is routinely used during diagnosis in community and academic hospitals. If validated, p63 immunohistochemistry would be a cost-effective biomarker that could provide valuable prognostic information to ACC patients worldwide.


Dr. Ferrarotto has orchestrated a collaboration among hospitals from around the world to share p63 levels and survival data from 500+ ACC patients. The network currently includes 12 institutions across 8 countries, and we are excited to watch as this infrastructure may be used for new impactful studies in the future.

 

ACCRF is proud to continue our ongoing partnership with Dr. Ferrarotto who has been a tireless champion of ACC research and patients. Her lab has produced several breakthroughs in understanding the disease, including identifying new therapeutic targets and markers of aggressive disease.




The Kara Gelb Memorial Grant is awarded in memory of an original member of the ACCRF Board of Directors and is bestowed upon a promising early- or mid-career investigator who is focusing on translating basic research into improved therapies for ACC patients. You can learn more about Kara here and past grantees here.

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. Listed studies below reflect any changes made since the previous email update.


Studies that have recently opened or begun enrolling patients:


  • Ivonescimab: this VEGFR and PD1 inhibitor study is recruiting ACC patients.


  • RGT-61159: this MYB inhibitor study is recruiting ACC patients.


Studies that have recently been closed or paused:





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. 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 grant:

Dr. John Ngo - Boston University - ACCRF awarded Dr. John Ngo a pilot grant to study protease-activated antibodies for tumor-selective NOTCH-1 inhibition.

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

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.



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