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.
Irene Jamieson is LBCA’s Volunteer Focus this September. Irene joined the Patient Advocate Advisory Board (PAAB) during the group’s inaugural year and immediately volunteered to serve as the chair of this group, which is committed to ensuring that the patient voice is at the core of LBCA’s work. Irene has served in this position for the past two years. She regularly shares her input and personal patient perspective and assists with agenda development and meeting facilitation. As chair, she also engages members during, and at times, outside of the meetings, and is always one to pitch in and help in other ways. We are fortunate that Irene has offered to continue in this role for another year. We thank Irene for her commitment to raising awareness about and advancing understanding of ILC, for her kind nature, and for all the ways she continues to support LBCA’s mission and vision.
In August we honored the contributions to LBCA and ILC research of Dr. Rinath Jeselsohn, outgoing chair of our Scientific Advisory Board (SAB). Since joining the SAB just over a year ago and immediately taking on the role of chair, Dr. Jeselsohn’s work with the SAB has been inspirational. She helped the SAB assess priority areas of action and the best ways that members might collaborate in promoting them. Under her guidance, several subcommittees were formed and scientists outside of the SAB were invited to join members in exploring potential options for collaboration on key ILC research initiatives. She then led the discussion with SAB members about which subcommittee work has the most potential and should continue. Dr. Jeselsohn has given generously of her time and ideas while also managing a busy clinical practice and a research lab. She provided thoughtful input to many of the helpful documents for patients and surveys that LBCA created and disseminated this year. She also co-authored a letter LBCA sent to breast cancer programs nationwide urging them to provide people diagnosed with lobular breast cancer specific information about ILC and LBCA and the resources we offer. We thank Dr. Jeselsohn for her continued support and commitment.
In July, we celebrated Janice Axelrod. She is a founding member of LBCA and serves as our volunteer research and communications officer and the vice chair of the Patient Advocate Advisory Board. A retired gynecologic oncologist, Janice brings her clinical background, her personal experience as an individual who has been diagnosed with ILC, and her generosity and sensitivity to all of her volunteer efforts. Janice is involved with many advocacy efforts related to ILC and is able to synthesize the stories and challenges she knows individuals face to assist LBCA to meet the needs of constituents across the spectrum. Janice is always willing to take the lead in drafting patient facing resources, such as Questions for My Doctor and Frequently Asked Questions, and is an active member of the Research and Advocacy Committee serving as an author on LBCA’s survey studies and abstracts for conferences. We value Janice’s numerous contributions to LBCA immensely and are happy to honor her this month.
June marked the end of the LBCA Fiscal Year, and we acknowledged Rob Oakes, LBCA treasurer and member of our Board of Directors. Rob joined LBCA early on as a volunteer to lend his accounting and management expertise when we were planning our launch as an independent 501(c)(3) charity. Rob is an accountant by training and a certified public accountant, holds a Masters in Business Administration, and has worked in a number of accounting, strategic planning, management, and consulting roles. He is a senior principal at the global consulting firm Slalom, where he has consulted with many organizations on matters such as organizational design, process improvement, financial management and reporting, project management, and enterprise systems. As a volunteer member of the Board of Directors, Rob works closely with LBCA staff on budget development, monthly budget reconciliations, and the development of financial controls and documentation. LBCA wishes to thank Rob for sharing his expertise and good humor with us on a regular basis. We appreciate all he has contributed and continues to contribute to our growing organization.
In May we took the opportunity to highlight the volunteer efforts of Gitte Joergensen. Gitte became involved with LBCA in 2020. From the beginning, she was eager to learn more about research advocacy and has participated in many trainings on the science of breast cancer and the numerous ways she could engage in research advocacy. This includes LBCA Advocate Chats, the National Breast Cancer Coaltion Project LEAD program, and the Department of Defense Breast Cancer Research Grant Reviewer training program. She is an active member of LBCA’s Research and Advocacy Committee, Patient Advocate Advisory Board, Outreach Committee, and she represents LBCA on the Global Lobular Breast Cancer Advocate Coalition. Gitte travelled as a patient advocate to the 2022 International ILC Symposium and has been an author on LBCA posters presented at the San Antonio Breast Cancer Symposium. Always willing to lend a hand on projects, we want to thank Gitte for the gift of her time and energy to advocate for ILC and breast cancer research. We are honored to work with her.
April is Global Volunteer Month, so we focused on the contributions that ALL of our volunteers make to support LBCA’s crucial work. We are honored to work with all of these individuals who are so passionately committed to the field of lobular breast cancer and lobular breast cancer research. We are fortunate to have so many people committed to moving the field forward for all affected by invasive lobular carcinoma. We thank each and every one of our volunteers for all of their contributions as we work for a world where lobular is identified early, treated effectively, and eradicated permanently. Thanks for all you do! Read more about our volunteers.
In March we recognized several members of the Scientific Advisory Board (SAB) for their volunteer efforts that go beyond their LBCA volunteer work and their professional roles of clinicians and researchers. In the fall of 2022, Drs. Jason Mouabbi and Gary Ulaner participated in a committee of the Society of Nuclear Medicine and Molecular Imaging (SNMMI) to develop the recently released Appropriate Use Criteria for the novel flouroestrodiol PET (FES PET). This AUC is used by referring and imaging physicians and insurance companies on the effective use of this nuclear imaging modality, which has important implications for patients with ILC. We also wish to acknowledge SAB member Dr. Maxine Jochelson, who worked with the Society of Breast Imagers (SBI) and LBCA to review drafts of a survey study of breast imagers on ILC and imaging. We thank these busy professionals for helping to raise awareness about ILC and furthering research and advances in practice that support individuals affected by this sneaky breast cancer.
In February we acknowledged the efforts of Hannah Dubb, a sophomore at Williams College who served as LBCA’s communication intern during January. During her internship, Hannah worked on a variety of projects. This included writing articles and creating graphics for our January newsletter and editing our inaugural Annual Report. Hannah also learned how to use an online graphic design tool to create a suite of visuals to be used across our social media platforms in the coming months. Additionally, Hannah shared her research skills with LBCA that will help with ongoing activities that could help raise future awareness for lobular breast cancer. Finally, Hannah tried her hand at scripting several public service announcements that we hope to use in the future. While Hannah was with LBCA for a short time, her impact will last much longer. We extend a heartfelt thank you to Hannah.
In January LBCA featured Joe Hutcheson. Joe is an attorney and an MBA who has applied his legal and business expertise in helping LBCA since May 2020 when his spouse and lobular breast cancer survivor, Laurie, became LBCA’s executive director. Joe was key in assisting Laurie identify and take the steps needed for LBCA to spin off from its fiscal sponsor and become an independent charity. Though his past work was in the for-profit sector, Joe has been exceptionally helpful in researching and assisting LBCA leadership to understand the requirements and parameters of being a nonprofit. His activities included developing materials to enable LBCA to file for incorporation, establishing by-laws and a board of directors, developing human resources and other policies, and selecting and establishing contracts with vendors, including those that assist LBCA with bookkeeping, payroll, insurance, and other consulting services. With Joe’s help, LBCA received tax exempt status in November 2021 and was set up to be able to solicit donations in every state and contract with organizations to start awarding ILC research grants. Joe always helps LBCA with good humor and thoughtfulness. Since LBCA became independent in January 2022, Joe has served as the volunteer secretary for the LBCA Board of Directors, has provided pro bono legal counsel, and helps with development activities. We are grateful for Joe and would not be where we are without him.
In December we focused on Julia Katherine Levine. She is an LBCA founding advocate, a Patient Advocate Advisory Board member, and our lead research advocate and publications/clinical trials curator. Julia is a dedicated volunteer and an integral part of the LBCA team. She continuously works on projects that support the goals of the organization. In the past month this included: curating, reviewing and coordinating LBCA Scientific Advisory Board member vetting of 40+ new research articles for our ILC Publications Library. Additionally, Julia serves as a representative for LBCA in our collaborations with the Metastatic Breast Cancer Alliance (MBCA) and other organizations such as breastcancertrials.org and the Metastatic Breast Cancer Project (Count Me In). This month she attended SABCS 2022 and presented updates about LBCA during MBCA’s Lightning Round talks. She was also a poster co-author on LBCA’s survey about metastatic ILC. She is currently taking part in talks with LBCA and SEER on urging posting of data by subtype and encouraging reporting of metastatic recurrences. We thank Julia for her continued contributions to LBCA and for helping it be the organization it is today.
November’s focus featured 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.
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.
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.
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!
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.
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.