ACCRF Spring Update - May 2023

ACCRF Patient Webinar #4:

Dealing with ACC Lung Metastases

Thank you to everyone who attended our 4th ACCRF Patient Webinar: Dealing with ACC Lung Metastases on March 4th. We are so grateful to all those who submitted excellent questions, and to Dr. Renata Ferrarotto and Dr. Jonathan Schoenfeld for taking the time to share their expertise and guidance on lung metastases.


If you were unable to attend, or you would like to rewatch or share the webinar, you can find the recording here along with previous webinars in our Patient Webinar Archive.

Summer Research Conferences

June 15-16 we will host the ACCRF Research Conference 2023: Advances in ACC Translational Research. This two day event will bring together top oncology researchers for presentations and panel discussions on the very latest in ACC research. We are excited to host so many exceptional scientists working towards a cure for ACC.


This conference is open only to medical and research professionals. For event information and registration, please visit the conference information page.

This June, ACCRF will also host our first-ever patient advocacy booth at the American Society of Clinical Oncology's annual meeting in Chicago. One of the largest cancer research conferences in the world, ASCO provides 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.


We look forward to sharing the latest developments from both events in a future update. 

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 some of the most recent research publications (with ACCRF grantee authors in parentheses) detailing the latest findings in the field:



The combination of axitinib (VEGFR inhibitor) and avelumab (PD-L1 inhibitor) shows reasonable anti-tumor activity in recurrent/metastatic ACC patients. 18% of patients experienced substantial tumor shrinkage (partial responses) and 57% of patients had stable disease for 6 months or longer. Work from this group describing molecular biomarkers that predict which ACC patients are most likely to respond to axitinib plus avelumab will be presented at the ASCO 2023 meeting. 



ACC that develops in different secretory glands around the body (salivary, mammary, lacrimal, skin/sweat) looks very similar at a molecular level. They all have similar gene expression and harbor many of the same gene alterations. Scientists from four ACCRF grantee institutions collaborated to find and analyze rare specimens from unusual body sites, buttressing the hypothesis that similar drugs may effectively treat ACC metastases from different primary tumor sites.


Two interrelated studies on single cell sequencing:




Analysis of individual ACC cells at their molecular level reveals differences in signaling across different cell populations within a tumor. Supported by ACCRF grants and provision of tumor specimens, these two papers describe the differences among cells within any given ACC tumor, suggesting new drugs and combinations to treat the disease. We are incredibly grateful to ACC patients who donated tumor tissue to make these—and many other—studies possible. 


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

Save the Date! 6th Annual Brave Like Gabe 5k

September 9, 2023

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. A formal invitation with event details will be shared this summer. We hope you will join us for this wonderful and important event!

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 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.

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