Lobular Breast Cancer Alliance Inc.

1. Raise Awareness and Educate about ILC:

Disseminate information to key audiences about the unique features of ILC and important findings from research. Provide educational materials in multiple formats to assist patients and former patients make treatment decisions and educate and advocate for more ILC research. Disseminate comprehensive ILC information on social media platforms and through the media. Establish relationships with major medical centers through which to disseminate ILC information.

2. Be the Go-to Source for ILC Research Findings and Information about ILC Treatment:

Maintain a library of the most relevant ILC research and current ILC-specific clinical trials. Post and disseminate timely, new, important ILC research underway and advances in knowledge about ILC detection and treatment. Provide opportunities for dialogue among clinicians and researchers to address challenges of detecting and treating ILC, discuss groundbreaking findings, and identify research priorities.

3. Support ILC Patient Research Advocacy:

Provide resources and information about research advocacy training opportunities to patients with ILC interested in breast cancer science to increase the number of patient advocates who understand research and medical terminology. Provide information about and connection to ILC advocacy opportunities. Expand the number of research advocates who are ensuring the patient perspective is included in research study and clinical trial designs, grant applications and reviews, and who are promoting LBCA’s mission at major breast cancer conferences and in advocacy efforts in their communities.

4. Cultivate Alliances Among U.S. and International Breast Cancer Advocacy Organizations:

Partner with breast cancer organizations in the U.S. and internationally to collectively advance ILC research and education. Expand the global network of ILC advocates, and offer opportunities through which ILC advocates from all over the world can meet and collaborate.

5. Fund and Advance ILC Research:

Provide ILC grant funding opportunities for specific ILC research initiatives and new investigators.

Goals 1 and 5 Programmatic Objectives were combined -

The objectives in FY 23 corresponding to LBCA Goals 1 and 5 include:

• Translating materials provided for patients on the website into 14+ languages and providing recordings and developing and providing lay summaries of invasive lobular carcinoma (ILC)-specific research presented at major breast cancer conferences;
• Creating additional audio and video short movies/PSAs that convey critical information about ILC and disseminating them and development of a PR campaign with other breast care organizations with a form of the message: Breast cancer is not one disease. It has subtypes and the subtypes need focused research to eradicate all breast cancer.
• Creating another survey of individuals with ILC and analyzing and submitting the results to the San Antonio Breast Cancer Consortium for presentation and publication at the annual conference.
• Supporting individuals with ILC to sit on cancer center tumor boards and other groups to represent the lobular patient perspective to clinicians and researchers in their local areas.

Goal 2: Be the Go-to Source for ILC Research Findings and Information about ILC Treatment:

The objectives in FY 23 corresponding to LBCA goal 2 include:
• Regularly updating the ILC publications library and the Clinical Trials page on the LBCA website,
• Creating a page on the LBCA website to highlight the new research of the LBCA Scientific Advisory Board members.

Goal 3: Support ILC Patient Research Advocacy and Identify and Implement ILC-specific National Comprehensive Cancer Network (NCCN) guidelines

The objectives in FY 23 corresponding to this goal 3 include:
• Expanding LBCA’s Advocate Chat webinar series – new topics will include information about ACS data on breast cancer currently available and the NCCN guideline revision process,
• Developing and publicizing to scientists LBCA’s registry of ILC patient advocates available to assist researchers,
• Collaborating with SAB members on writing a white paper on ILC-specific imaging or an ILC treatment topic.

Goal 4: Build Alliances Among U.S. and International Breast Cancer Advocacy Organizations to Jointly Promote and Fund ILC research:

The objectives in FY 23 corresponding to this goal include:
• Engaging actively with the European Lobular Breast Cancer Coalition (ELBCC) on developing ILC Symposium and wrap up sessions and on ILC-focused committee work on standardizing ILC pathology,
• Collaborating with two or more breast cancer organizations to produce ILC-focused webinars,
• Identifying and sharing with SAB members new sources of ILC patient data and jointly determine ways to help increase access to them for analysis,
• Represent LBCA on the National Breast Cancer Coalition and the American Cancer Society Breast Cancer Roundtable,
• Fund at least one ILC-specific research grant solicitation in conjunction with an organization such as the Society of Nuclear Medicine and Molecular Imaging.

In addition to our staff who manage LBCA's website, e-newsletter and volunteer activities, we have a Scientific Advisory Board of respected scientists conducting ILC research and a Patient Advocate Advisory Board with volunteers actively engaged in promoting awareness of ILC issues by contributing to our publications, participating in research grant administration and attending breast cancer related conferences.

We accomplished the following in pursuit of our goals during our first fiscal year as our own free-standing public charity:

AWARENESS AND EDUCATE:
- Produced three movies/PSAs about ILC, LBCA and the need for more research, one with celebrity Angela Stanford and one featuring patient advocates and internationally renowned
clinicians/researchers
- Created a survey to raise awareness about ILC patient imaging issues with tumor detection and monitoring, which we presented at the San Antonio Breast Cancer Symposium, the largest breast cancer conference in the United States
- Presented three educational webinars/panels via video conferencing on Imaging diagnostic tools, standardization of ILC pathology and metastatic ILC
- Made more connections with important breast cancer organizations, including Canadian Breast Cancer Network and DenseBreast-Info.org
– We were invited to assist the American Cancer Society with the Breast Cancer Roundtable, were elected to the board of the National Breast Cancer Coalition and became a member of the European Lobular Breast Cancer Consortium and the patient advocate advisory board of Society of Nuclear Medicine and Molecular Imaging
- Collaborated with Metastatic Breast Cancer Alliance around Here all Year campaign, producing metastatic ILC content for each of four weeks in July, and with the Count Me In initiative to help their Amplifying Black Voices Across Cancer campaign
- Increased our audience over last year (more newsletter subscribers), more visits to our website, and we launched on Instagram and began to translate patient resources into Spanish

GO TO SOURCE OF ILC INFORMATION:
- Shared two blogs related to ILC treatment
- Provided lay summaries of ILC research presented at the San Antonio Breast Cancer Conference presentation on Support ILC Patient Advocacy
- Launched Patient Advocate Advisory Board
- Produced Advocate Chat on Telling your ILC Story and on breast cancer patient advocacy opportunities in the federal government national cancer institute
- Collaborated with Metastatic Breast Cancer Alliance to post information on metastatic ILC on their website
- Provided travel scholarships to four patient advocates to cultivate alliances among International ILC organizations
- Co-organized and participated in Patient Advocate-led Session at International ILC Symposium