Dear Friends,

As the summer draws to a close and I mark my first six months as ACCRF’s Executive Director, it seems a fitting time to reflect on the year so far and look ahead to the months to come.

We continue to see encouraging early results from several ACC clinical trials, and two drugs have recently received FDA designations suggesting their promise in ACC: Emi-Le, a B7-H4 antibody drug conjugate (ADC) received Breakthrough Therapy Designation, and REM-422 (a MYB degrader) received Fast Track Designation. As part of our efforts to raise awareness and advocate for people living with ACC, ACCRF met with the FDA alongside medical oncologists who specialize in ACC to share insights about the disease and the challenges faced by patients. Additionally, new clinical trials opened that include ACC patients, testing treatments such as LNCB74 and P-Sam (two different B7-H4 ADCs), PIN-5018 (a CK1a degrader), and CRD3874-SI (STING agonist).  

For our education and engagement efforts, we were thrilled to host our first-ever Chicago Patient Meeting this May in addition to our yearly Needham meeting, creating more opportunities for ACC patients to connect in person. But we aren’t stopping there! This November we will be hosting our first Los Angeles Patient meeting, offering a chance for our West Coast community members to gather, share, and learn. This fall will also see our next Patient Webinar discussing how to interpret your lung CT scans, featuring Dr. Florian Fintelmann, the Medical Director of Thoracic Radiology at Massachusetts General Hospital. You can learn more about these events and register in the update features below.

These past six months have brought meaningful progress in our work and many opportunities to connect within the ACC community. I feel privileged to be a part of such a dedicated network, and I look forward to continuing this work together in the months ahead. On behalf of everyone at ACCRF, thank you for your partnership. We hope you enjoy these final days of summer as we move into a fall filled with promise.

Sincerely,

Dr. Nicole Spardy Burr, PhD

Executive Director

When Amanda (Mandy) Kedaigle learned of her mother’s ACC diagnosis, she didn’t know anything about the rare cancer, but she knew she wanted to make a difference not only for her mom, but for the ACC community.

She began volunteering with ACCRF in 2017, while she was a graduate student at MIT. As she became more familiar with ACC and the foundation’s research efforts, she saw an opportunity to connect her personal advocacy with her academic work.

Amanda created a genomic database that continues to be a vital resource for many ACC researchers in understanding how the disease functions and identifying drug targets for better treatments. You can read more about Mandy's incredible work here.

As research in ACC continues to evolve, patients and families naturally have questions about what new findings mean for the disease and for those living with it. Our new FAQ series will address some of the questions we hear most often, drawing on current research and the expertise of ACC specialists.

In our first FAQ installment, we look at ACC-I and ACC-II, what these subtypes may tell us about the disease and what researchers are still working to understand.

Researchers have steadily identified characteristics, or biomarkers, of ACC tumors that help define ways that the disease is likely to behave. In a 2021 study, researchers used genomic and protein analyses of ACC tumors to identify two molecular subtypes, called ACC-I and ACC-II. These subtypes differ based on certain molecular features and correlated with disease aggressiveness. Generally, ACC-I is considered a more aggressive form with higher likelihood of recurrence while ACC-II is often referred to as "indolent" or slow-growing.

These subtypes are useful to researchers, physicians, and patients in better estimating prognosis, finding potential drug targets, and determining the most effective treatments. You can learn more about the nuances of ACC subtypes and what they can tell us about the disease in the full FAQ feature.



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 recently opened to ACC Patients:

• CRD3874-SI: phase 1 trial testing Curadev's STING agonist, CRD3874-SI, is open to recurrent/metastatic ACC patients at Memorial Sloan Kettering Cancer Center in New York, NY, USA.

• Becotatug Vedotin (EGFR ADC) and SBRT: phase 2 trial testing an EGFR ADC (Becotatug Vedotin) followed by SBRT is open to recurrent/metastatic ACC patients at Shanghai 9th People’s Hospital in Shanghai, China. 



Studies that have recently closed or paused:

• Pemetrexed and Pembrolizumab: phase 2 trial testing Pemetrexed and Pembrolizumab for Recurrent and/​or Metastatic Salivary Gland Cancer closed recruitment. 

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.