Highlighting the Accomplishments of Lobular Breast Cancer Alliance Volunteers
The Lobular Breast Cancer Alliance (LBCA) was founded by volunteers and patient advocates, and breast cancer clinicians and researchers actively collaborating to increase knowledge of invasive lobular carcinoma (ILC), also known as lobular breast cancer, and promote and fund ILC research. It is in this tradition that LBCA continues to recognize and encourage the continuing work of our organization’s volunteers by taking time each month to highlight individuals and groups of people whose work and advocacy are making a difference to those diagnosed with lobular breast cancer.
Thanks to every volunteer and patient advocate for the work you do. You are ensuring we fulfill our vision: A world in which lobular breast cancer is found early, treated effectively, and eradicated permanently.
Learn more about ways to volunteer with LBCA.
In July we shine the spotlight on volunteer Harry Hope, a media studies and production major at Temple University. Harry offered his video editing skills to help the Lobular Breast Cancer Alliance (LBCA) in its advocacy efforts. His first project was an important one, editing LBCA’s Cancer Moonshot video, which shared how invasive lobular carcinoma (ILC) research has been left behind and how in the case of ILC diagnoses, so many individuals are still being diagnosed at later stages and/or when their tumors are larger or metastatic. When completed, the video was uploaded to the White House’s Cancer Moonshot portal and placed on LBCA’s website and YouTube channel. We thank Harry for making this video come to life. This video has nearly 1,200 views on YouTube in just a month’s time and is our second most watched video.
June’s focus was on two Lobular Breast Cancer Alliance (LBCA) Scientific Advisory Board (SAB) members involved in the 2022 ILC Symposium and Summer School. Patrick Derksen, PhD, and Dr. Otto Metzger, MD, represented LBCA as part of the organizing committee for the event that took place in Utrecht, Netherlands on June 20-21. The symposium brought together ILC researchers and patient advocates from around the world to learn the latest information about ongoing lobular breast cancer research and ways to better collaborate with each other. Dr. Derksen is also co-chair of the European Lobular Breast Cancer Consortium (ELBCC), which hosted the event. We thank them and everyone involved in putting this conference together. Learn more about the event, including the agenda and a complete list of organizers and speakers.
In May we acknowledged a small group of committed volunteers who shared their time, experience, and expertise to develop a patient experience survey on metastatic invasive lobular carcinoma (mILC). This anonymous survey will be released in June and responses will be used to raise awareness about the experiences of patients with mILC, and the critical need for more research. We thank our survey working group members: Janice Axelrod, Ann Camden, Tracy Cushing, Donna Charlevoix, Theresa Langdon, Julia Levine, Christine McKay, and Barb Neilsen for their dedication to this effort! We also thank our Scientific Advisors who have reviewed and provided comments on the survey as well.