ACCRF Update - November 2024 | |
Honoring Shawn George's Contributions to the ACC Community | |
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Shawn Elizabeth George has never backed down from a challenge. As an author, speaker, educator, and mother of three, she has always faced adversity head-on with creativity, compassion, and hope. So when she was diagnosed with ACC in 2017, she knew that a greater purpose could come from an incredibly difficult situation.
From organizing fundraisers, to advocating for insurance coverage for ACC patients, to being an unfailing source of support, guidance, and comfort to the patient community, Shawn has become an invaluable part of the ACCRF family and a great champion of our work. And she just ran the 2024 New York City Marathon to support ACC research! Congratulations Shawn!
You can read more about Shawn's incredible work along with the remarkable contributions of all our Patient Champions.
On behalf of the ACC research and patient communities, we extend our sincerest gratitude to Shawn George for her tireless efforts and for being a source of hope for ACC patients everywhere.
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Patient Webinar #7: Tumor Board for ACC Metastases | |
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Thank you to everyone who attended our most recent webinar discussing tumor board decision making for the treatment of ACC metastases. We are so grateful to everyone who made this one of our most well-attended webinars to date!
We want to once again express our deep appreciation to Dr. Jonathan Schoenfeld and Dr. Paul Swiecicki for taking the time to share their expertise, insight, and guidance on the treatment options available to patients, and for all their contributions to the ACC research and patient community!
If you were unable to attend, you can watch a recording of the webinar here along with all of our previous webinars in our Patient Webinar Archive.
Have a suggested topic for a future webinar? Let us know at info@accrf.org
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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. | |
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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 been closed or paused:
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KT-253: this study of a MDM2 inhibitor is no longer enrolling patients.
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Amivantimab: this study of a EGFR inhibitor has paused enrollment for an interim analysis.
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TAK-676: this study of a STING antagonist is no longer enrolling ACC patients.
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APG-115 this study of a MDM2 inhibitor is no longer enrolling ACC patients.
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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.
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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:
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Dr. Mridula George - Rutgers Cancer Institute - Pilot grant to complete a systematic literature review of clinical care for patients with ACC of the breast.
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Dr. John Iafrate - Massachusetts General Hospital - Pilot grant to study immune evasion mechanisms in ACC.
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ACCRF is proud to support an international, multi-institutional project focused on validating the prognostic utility of p63 immunohistochemistry in ACC. This project will analyze 500+ ACC tumors collected from 10 hospitals across 8 countries. The initiative is pioneered by Dr. Renata Ferrarotto from MD Anderson Cancer Center and involves the following medical sites and physicians:
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Drs. Renata Ferrarotto (MD Anderson Cancer Center, Houston, Texas, USA)
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Drs. Robert Metcalf, Laura Sturgeon, and Guy Betts (The Christie NHS, Manchester, UK)
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Drs. Lisa Licitra, Elena Colombo and Andrea Vingiani (Fondazione IRCCS Instituto Nazionale dei Tumori, Milan, Italy)
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Drs. Milena Perez Mak and Evandro Sobroza de Mello (Instituto do Cancer do Estado de Sao Paulo, Sao Paulo, Brazil)
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Drs. Alan Ho and Nora Katabi (Memorial Sloan Kettering Cancer Center, New York, New York, USA)
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Drs. Isabel Fonesca and Miguel Rito (Portuguese Institute of Oncology of Lisbon, Lisboa, Portugal)
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Drs. Ben Panizza and Caroline Cooper (Princess Alexandra Hospital, Brisbane, Queensland, Australia)
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Drs. Carla van Herpen and A.C.H van Engen-van Grunsven (Radboud Medical Center, Nijmegen, Netherlands)
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Drs. Bhumsuk Keam and Kyeong Cheon Jung (Seoul National University Hospital, Seoul, Korea)
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Drs. Paul Swiecicki and William Perry (University of Michigan, Ann Arbor, Michigan, USA)
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7th Annual Brave Like Gabe 5K
Congratulations to all the participants of this year's annual Brave Like Gabe 5K. This year's race raised $40,000 for ACCRF's research efforts, and with 1,100 participants worldwide and nearly 400 at the main event in St. Paul, this was one of the most successful 5Ks in the organization's history!
ACCRF is so grateful to the generosity and dedication of the Brave Like Gabe foundation, and we are proud to continue our partnership in the fight against ACC!
You can learn more about Brave Like Gabe at bravelikegabe.org.
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And a special thank you to Sue and Dave Morse for another highly successful Brave Like Gabe satellite race in Winchester, MA. The Morses have participated in the BLG 5K for five years, and each year they create a truly special event that brings people together to support ACC research and celebrate the community. And of course enjoy the famous taco truck! Thank you to the Morse family for their support and hard work in making such a wonderful event happen each year!
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ACCRF Patient Gathering - Ann Arbor
Thank you to all the attendees of the 2024 Fall Patient Gathering in Ann Arbor, MI on October 12. It was a wonderful day of community, connection, and hope. We were joined by Dr. Paul Swiecicki of the University of Michigan who offered insight into some of the latest developments in ACC treatments and led a discussion with patients. We are proud to continue to create spaces where patients can come together and discuss their own experiences and journeys and support one another.
If you are interested in hosting or organizing a local patient gathering, please let us know at info@accrf.org!
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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. 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 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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