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YEAR IN REVIEWJULY 1, 2020 - JUNE 30, 2021LOBULAR BREAST CANCER ALLIANCE

LBCA's MissionAs the only organization in the US dedicated to invasive lobularbreast cancer (ILC), LBCA’s mission is:To make all who are touched by ILC aware of its uniquecharacteristics and the critical need for more ILC research; to be thego-to source for information on ILC studies, clinical trials andeducational tools; to foster partnerships among patients, scientists,clinicians, and breast cancer organizations to increase dialogue aboutILC and research advocacy; and to fund vital ILC research.LBCA's VisionA world in which lobular breast cancer is found early, treated effectively, and eradicated permanently.To accomplish our mission and vision, LBCA is guided by five primary goals:1. Raise Awareness and Educate about ILC2. Be the Go-to Source for ILC Research Findings and Information about ILC Treatment3. Support ILC Patient Research Advocacy4. Cultivate Alliances Among U.S. and International Breast CancerAdvocacy Organizations5. Fund and Advance ILC Research

Dear LBCA Community,What a year this has been for the LobularBreast Cancer Alliance (LBCA), despite thepandemic! LBCA has made great stridestoward becoming an independent, non-profit organization working with severalstaff and many volunteers. We alsoexpanded our Scientific Advisory Board,and have attracted 870 new newslettersubscribers.The following are some of the highlights ofthis past year in each of our major goalareas, about which we are quite proud.More about our goal areas follows in ourreport.Over the year, many individuals with ILCresponded to our invitation to tell their ILCstory. We received many tales of frustratedsearches for information about ILC untilpeople found their way to LBCA and movingdescriptions of the resilience of patientswith ILC in the face of difficult treatmentand incomplete information. These storieshave become newsletter favorites. In our aim to continue to be the go-tosource for ILC research findings andinformation, we revamped our website tomake it more user-friendly and added over50 new publications to our online library.We also produced a scientific blog andseveral video interviews with our ScientificAdvisory Board members on hot topics.In support of ILC patient advocacy, thiswinter we launched a series we callAdvocate Chat, which are opportunities forpatient advocates to meet one anothervirtually and to learn about and sharepointers on a variety of advocacy activities.These were well received and more areplanned. We continue to expand relationships withother breast cancer advocacy organizations,such as the MBC Alliance with which wecollaborated to produce the July edition oftheir web-based Here All Year campaignproviding key facts and issues aboutmetastatic ILC. And in June, LBCA advocatesand scientists collaborated with breastcancer advocate and scientific organizationsin Europe to present the long awaitedsecond ILC Symposium virtually. But perhaps our biggest accomplishmentthis year, which propelled us one step closerto our vision of eradicating ILC, was ourcollaboration with AACR and ASCO thatenabled us to fund two ILC research grantsdirectly! There was a great response tothese ILC research grant solicitations, andwe plan to issue even more next year. I am thankful for the engagement of ourlively and supportive community of patientswith lobular breast disease and their lovedones, whose input helps us to continuallyimprove what LBCA is and does. I am supremely grateful for the loyalsupport of all of our donors, including Kimand John Motschenbacher, whose cross-country bike ride to raise awareness of ILCand funds for LBCA has been so inspiring. Without our donors, we would not continueto be the vibrant and growing entity that weare, and we would certainly not have beenable to fund ILC research this past year andbe planning for more in the next. Thank you all!Laurie HutchesonMESSAGE FROM THE EXECUTIVE DIRECTOR

RAISE AWARENESS AND EDUCATE ABOUT ILCLBCA activities to raise awareness and educate about ILC through our website,through collaborations with other advocacy organizations, and through ourpresentations in webinars and at conferences have been numerous this year. Early in 2020 we assessed our website for user-friendliness. With the input of manypatient advocates, we upgraded it with many new improvements. We added a pagespecifically for patients that includes a metastatic ILC sectionsection, launched acalendar to provide information each month on important breast cancerconferences, and posted presentations with relevance for ILC or research advocacyopportunities all in once place so they are easier to access. We also initiated aquarterly scientific blog on varying topics written by our Scientific Advisory Board members and other guest scientists. Finally, we increased our social mediapresence by creating an LBCA profile on LinkedIn and a branded YouTube channel.Members of LBCA’s leadership and Scientific Advisory Board collaborated withpartners to amplify voices and information about metastatic ILC. This included aninterview for the OurMBCLife podcast and a collaboration with the Metastatic BreastCancer Alliance to develop materials and videos focusing on various aspects ofmetastatic ILC for the organization's Here All Year campaign.Throughout the year, LBCA patient advocates presented at many virtualconferences including the National Breast Cancer Consortium Leadership Summit,the Alamo Breast Cancer Foundation Advocates Program, and the Komen MetastaticBreast Cancer Conference. LBCA advocates and scientific advisors also developedlay summaries for the 13 ILC-focused posters at the virtual San Antonio BreastCancer Symposium (SABCS) 2020 and worked with GRASP to provide mentors formany virtual poster sessions. These sessions gave advocates a deeperunderstanding in lay language of the science presented in the posters.Finally, in June, LBCA helped conduct the long-awaited and previously canceledInternational ILC Virtual Symposium including developing and moderating a 90-minute advocate focused session featuring a panel of our Scientific AdvisoryBoard members presenting highlights of the ILC symposium sessions.

Over the year, LBCA has continued to expand its library of ILC-specific publicationsand make it easier to navigate. Over 50 new, important ILC-focused publicationswere added to our library. Additionally, information regarding three clinical trialsthat include or focus on people with ILC were added to our website’s clinical trialspage. Working with the Scientific Advisory Board, LBCA’s volunteer advocate researchcommittee created a timeline graphic and accompanying story in lay termsregarding milestones in the progress of ILC research between 2000 and 2020. LBCA also continued its partnership with BreastCancerTrials.org. Their resource,Metastatic Trial Search, a clinical trial matching service developed specifically forpeople with advanced and metastatic breast cancer, was updated to better meetthe needs of people with ILC. The tool added lobular as a subtype so that userscan filter trials to see only the trials that allow enrollment of people withmetastatic lobular breast cancer. It also added a checklist in their filter ofunusual places where ILC can spread. BE THE GO-TO SOURCE FOR ILC RESEARCH FINDINGSAND INFORMATION ABOUT ILC TREATMENT

LBCA is committed to helping individuals with ILC and their loved ones learn how toeducate others about ILC. We describe this as education advocacy. We provideinformation and virtual training about advocacy and how to find or create this type ofadvocacy opportunity. We also strive to help individuals with ILC who are interested inthe basic science of breast cancer and having some influence on decisions about breastcancer research to become “research advocates.” We do this by providing resources forlearning more about research advocacy and links to organizations that provide training.In the summer of 2020, LBCA sponsored two opportunities for patients with ILC aroundthe world to meet one another via video conference. The consensus was that such get-togethers with other patient advocates to focus on patient advocacy was reallyimportant. At the suggestion of attendees, LBCA launched its Advocate Chat series in the winter of 2021.The Advocate Chat series features invited guests presenting on various topics includingadvocacy and social media and how to get involved in research locally. Recordings of allof the presentations are on our website.In the Spring of 2021, LBCA and Scientific Advisory Board members developed two ILC-focused grant solicitations and wrote in explicit requirements for applicants to utilizepatient advocates in both the development of applications and grant implementation ifawarded. LBCA members also participated in the grant application review process. Alsothis year, five advocates participated in research advocacy training and breast cancergrant review activities for the Department of Defense Breast Cancer Program.In June, 2021 LBCA patient advocates conducted a survey on imaging and ILC amongpeople with ILC in the LBCA community. Over 1,475 responses were received and thediscussion of the survey process and analysis was developed into an abstract forsubmission to the San Antonio Breast Cancer Symposium (SABCS) 2021 for publication andan invitation, we hope, to prepare a corresponding research poster for presentation atthe SABCS this December.SUPPORT ILC PATIENT ADVOCACY First LBCA Advocate Meet and Greet Video Conference

Early in the calendar year, LBCA began to host meetings with two European lobularbreast cancer advocacy organizations with the intention of keeping one anotherapprised of our actions and identifying opportunities for collaboration in thepromotion of ILC research. LBCA, with these advocacy representatives, also helped members of the LBCA ScientificAdvisory Board and of the European Lobular Breast Cancer Consortium implement the2021 International ILC Virtual Symposium. LBCA and these same representatives alsocollaborated on a piece titled How Researchers, Clinicians and Patient Advocates CanAccelerate Lobular Breast Cancer Research. The article was published in June by Cancers,an online, peer-reviewed, open access journal of oncology published semimonthly. CULTIVATE ALLIANCES AMONG U.S. AND INTERNATIONAL BREAST CANCER ADVOCACY ORGANIZATIONS International Partners:

FUND AND ADVANCE ILC RESEARCHWith the help of its Scientific Advisory Board, patient advocates, and very generousdonors, LBCA has made huge strides in advancing ILC research this year. Five donors’significant gifts made it possible for LBCA to establish and fund two earlyinvestigator grants with the administrative support of the American Academy ofCancer Research (AACR) and Conquer Cancer/the American Society of ClinicalOncologists (ASCO) Foundation. The one-year Conquer Cancer/ASCO Foundation grant will be awarded at the end ofJuly 2021 and will be effective August 1. Applications for the AACR grant, which is atwo-year research fellowship, are due in the fall. The review processes for bothinclude LBCA Scientific Advisory Board members and other scientists and clinicianswith ILC expertise, and LBCA research advocates. The two ILC grant solicitationsgenerated a lot of excitement in the scientific community and, as we had hoped,interest in ILC research. Over 40 individuals submitted Letters of Interest to applyfor the AACR grant alone!LBCA was also approached by two intrepid individuals, one with ILC, who proposed anew way to increase awareness about ILC and to fund more ILC-sponsored researchby riding across the continental United States on their bicycles. The couple arepromoting their journey and fundraising effort via a blog called Motch AcrossAmerica. They left from Washington state in May and plan to reach Virginia by LaborDay. Not only have they already raised thousands of dollars for LBCA, but publicityabout this ride and ILC and LBCA has already been shared in local newspapers and picked up by TV stations in two media markets – the first time ILC has appeared ingeneral media!

“As an ILC patient who has been fortunate to be able to help support LBCA, I’m verypleased with how LBCA has expanded their advocacy, their network of patient advocates,and now funds research grants. It’s exciting to be a part of LBCA as the organizationsgrows, with the ultimate goal being that in the future, there will be little or no need for itto exist.” Sarah B., Loyal Supporter and Person with ILC"I was diagnosed with lobular breast cancer at the age of46. This ride is a time for personal growth and a time toreflect on the last 10 years and our cancer journey. Now,I’m just ready to make a difference and really bringawareness to the Lobular Breast Cancer Alliance.” Kim Motschenbacher reflecting on her cross country bikeride with husband, John.www.lobularbreastcancer.org"Women with lobular breast cancer, their caregivers, andtheir primary care physician need more education andinsight! A lobular breast cancer patient in Nigeria hasnumerous challenges. One is understanding theirdiagnosis. A second is finding resources to navigate theirway through their treatment continuum. I support mypatients as best as I can with the available resources, suchas those from the LBCA, but I look forward to being able todo even more as more is learned about best treatmentmethods through more research." Olayinka, Patient Navigator, NigeriaWhat Our Supporters Are Saying