Volunteer Focus

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. 

November 2022

This month’s focus is on Daneen Huddart who kicked off Breast Cancer Awareness Month by holding a fundraising event for LBCA at her home. Daneen had wanted to do this fundraiser for a few years. Daneen lives on Secret Lake, so she felt her home was a fitting setting for an event focused on lobular breast cancer – “the sneaky, secret breast cancer” as she calls it. In early summer, Daneen gathered a group of friends and family to help with planning, and they put together an evening of fun, food, music, and fundraising on October 1. To accommodate those who might not be able to attend, she also started a Facebook fundraiser so they could support her efforts virtually. Daneen raised nearly $5,000! Daneen admits it was a lot of work, but she would definitely do it again and will continue to help raise funds for LBCA in any way she can. We thank Daneen for all of her efforts hosting this successful fundraiser.

Photos os Siobhan Freeney, Claire Turner, George Sflomos, RIta Muhktar, Karen VanBaelen

October 2022

In October, LBCA was pleased to put the focus on a collection of lobular breast cancer researchers and ILC patient advocates who made Highlights of the 2022 Joint International ELBCC/Lobsterpot & LBCA Invasive Lobular Carcinoma (ILC) Symposium a success. This virtual event allowed participants to hear presentations on the key aspects of the ILC science in lay terms that were presented during the in-person ILC Symposium this past June. First, Dr. George Sflomos presented basic ILC research. This was followed by Dr. Karen Van Baelen who discussed translational research and LBCA Scientific Advisory Board member Dr. Rita Mukhtar who presented clinical research. ILC patient advocates Claire Turner and Siobhan Freeney helped in planning the session, and Claire was a co-moderator. It is only with these types of collaborations between ILC researchers and advocates that LBCA is able to hold these kinds of events and educate people about ILC. We thank them for their time and effort.

LBCA Volunteer Ann Camden

September 2022

The summer months were busy for LBCA volunteer Ann Camden. After helping other LBCA research advocate volunteers to develop a patient experience survey on metastatic lobular breast cancer, Ann was focusing on two other projects. First, she provided input on and developed a first draft of a one-page document raising awareness of breast cancer subtypes and how they all need focused research if we are to eradicate breast cancer. Ann is now in the process of drafting a letter about lobular breast cancer that will be used in our outreach to breast cancer program leadership at cancer centers across the country. In addition, Ann routinely gives feedback to our efforts as part of our Patient Advocacy Advisory Board. We thank Ann for her many contributions to LBCA. 

Dr. Megan Kruse and Dr. Matthew Sikora in Volunteer Focus frame

August 2022

LBCA Scientific Advisory Board members are our ambassadors in the scientific community and also help us provide current information about ILC research and clinical trials effectively and in lay terms. In August we recognized Scientific Advisors Megan Kruse, MD, and Matthew Sikora, PhD, for their work on this summer’s Advocate Chat series. LBCA’s Advocate Chat provides people with a way to learn more about different aspects of patient advocacy. On July 6, Dr. Kruse discussed one of her own scientific posters and shared how research ideas come to be, how advocates can get the most out of conferences and presentations, and how to read and understand research posters. On July 20, Dr. Sikora spent time with ILC patient advocates discussing what basic laboratory research is, who works in the lab, how research is funded, and ways advocates can partner with researchers. We thank Drs. Kruse and Sikora for sharing their time and knowledge with us!

 

Volunteer Harry Hope in Volunteer Focus template

July 2022

In July we shined 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.  

Drs. Patrick Derksen and Otto Metzger shown in Volunteer Focus frame

June 2022

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.  

Photos of Various Volunteers in Circles

May 2022

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.

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