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ACCRF Update
March 2018

New Member of Scientific Advisory Board

Dr. Guillermina Lozano Joins 
ACCRF Scientific Advisory Board

ACCRF is extremely fortunate and proud to announce that   Dr. Guillermina (Gigi) Lozano  has joined the Scientific Advisory Board. She is a Professor at the MD Anderson Cancer Center in Houston, Texas, USA, and serves as the Chair of the Department of Genetics. Her work in understanding the role and functioning of tumor suppressor genes in cancer is widely acclaimed. Dr. Lozano was elected to the National Academy of Medicine in 2014 and the National Academy of Sciences in 2017. 

Over the past dozen years, the ACCRF Scientific Advisory Board has set the strategic direction for the foundation's research activities.  Thanks to the intelligence and diligence of these world-renowned scientists, we have made great strides in the field of ACC research . Dr. Ned Sharpless recently resigned from the ACCRF Scientific Advisory Board in order to lead the U.S. National Cancer Institute. As witnessed by the arrival of Dr. Lozano, ACC patients continue to benefit from the insights and wise counsel of the world's top oncology researchers.  
The full membership of the Scientific Advisory Board is available on the   Leadership  webpage.

Clinical Trials Update

ACC pati ents with progressive disease are faced with difficult decisions on whether to consider surgery, radiation, ablation or systemic therapy. In order to assist those patients consid ering systemic therapy, ACCRF provides a list of   currently-open clinical trials   to discuss with a knowledgeable medical oncologist. Several developments are worth highlighting:

  • The University of Chicago (Chicago, USA) has opened a new phase II clinical trial of pembrolizumab (PD-1 immune checkpoint inhibitor) and docetaxel in salivary gland cancer patients, including ACC. 
  • The Peter MacCallum Cancer Centre (Melbourne, Australia) has delayed the opening of its MYB vaccine clinical trial for a few months. We will add it back once it opens.
  • The phase II clinical trial of apatinib in Shanghai, China, is no longer recruiting patients.
  • The phase II clinical trial of axitinib in Milan, Italy, is no longer recruiting patients.
We anticipate the opening of 3 or more clinical trials designed for ACC patients in the coming year. ACCRF will continue to educate the patient community about the results of past studies as well as new options as they become available.

Physicians List Update

Choosing the right physician(s) to guide your treatment planning is one of the most important decisions for any ACC patient. It is important to consult with specialists who are familiar with ACC, a rare and peculiar cancer that is not widely understood.  
In conjunction with ACCRF's close partners at ACCOI, we recently updated and reformatted our   ACC Physicians List. Many new specialists have been added based upon the recommendations of ACC patients with direct experience with each physician. In addition, the list is simpler to navigate as countries and U.S. states are no longer intermingled. Now, all countries are listed alphabetically.
You can make the ACC Physicians List even better! Please email  if you or a loved one has experienced excellent care for ACC and your physician is not included on our list. We are particularly interested in recommendations for physicians in countries and regions that are not already well represented. Thanks for your help!

Minnesota Patient Meeting & 
Brave Like Gabe 5K

Gabriele "Gabe" Grunewald is a professional American middle-distance runner who has been a U.S. champion in the 3,000-meters race. Initially diagnosed with ACC in 2009, she experienced recurrences in 2016 and 2017 while competing at the highest levels of track and field competition. Her compelling story is recounted in this video.

Now, along with ACCRF Director Lisa Bakri, Gabe has organized a 5K race in her native Minnesota to support ACCRF and our mission to accelerate the development of improved therapies and a cure for ACC. She is committed to helping rare cancer patients retain their hope and push through their adversities.

ACCRF is holding its annual patient meeting in conjunction with the race. The afternoon before the race, patients and their loved ones are invited to participate in a casual, friendly gathering to share stories, experiences and support:
ACCRF Patient Meeting
May 19, 2018 @ 1-5pm
Minneapolis, MN, USA

Email for details.

The next day, there will be a professionally-managed 5K race around beautiful Lake Como:

May 20, 2018 
St. Paul, MN, USA

To register, click here:   Brave Like Gabe 5K to Support ACCRF

 Please Help Support ACC Research