Goal 1: Raise Awareness and Educate about ILC and Need for ILC Research

Objectives:
1. Increase accessibility of LBCA materials and events

• Translate at least two new patient resources, such as the imaging manual (in development) or the new FAQ regarding the science of ILC (in development) into 15 foreign languages in addition to Spanish.
• Conduct targeted outreach to make non-English speaking audiences aware of our many translated materials.
• Explore capacity for enabling google to translate web content when non-English speaking individuals visit.
• Post/disseminate the slides and recordings from all LBCA-sponsored virtual ILC Symposium wrap up sessions, LBCA Advocate Chats, and other virtual events, when available. Determine how to provide written transcripts from virtual events and implement, if feasible.
• Develop a pre-recorded webinar to recap the key takeaways from the ILC Symposium in Belgium in lay language with captions in six different languages most spoken in Europe.
• Conduct webpage improvement project with contracted web designer annually.

2. Expand LBCA’s reach to new audiences and media

• Identify and make new connections with at least two major sports figures, leagues, women driven companies, or other corporations (including sportswear or gear) that support breast cancer charities.
• Expand social media presence on Facebook, Instagram, LinkedIn, YouTube, and Twitter by increasing the frequency of posting across platforms to at least weekly and more around significant dates.
• Produce quarterly report on analysis of digital engagement including social media, newsletter and website. Use analytics to help guide improvements to post content, placement, timing, understand what’s being downloaded from web, etc.
• Strategically purchase paid ads on social media and assess effectiveness.
• ID at least two additional strategies for disseminating LBCA PR materials (new and existing) more broadly and more frequently and incorporate them into communications plan.
• Develop materials for Local Advocacy Teams to use/disseminate.
• Create and disseminate a marketing campaign message for breast cancer awareness month (BCAM) 2025
• Develop BCAM webpage to house materials and press kits for download related to BCAM campaign.
• As part of Oct 15th campaign, target industry publications for paid advertising
• Work with PR firm to create national year long messaging about breast cancer types and lobular targeting women age 40+ and dissemination/ad placement strategy.
• Share outreach materials about ILC with at least two organizations that don’t yet share ILC/LBCA info on their websites and/or that we hope will publish or help us to disseminate information about ILC (e.g., AMA, legislative bodies, AACR’s Cancer Today magazine, SBI, Society of Nurse Oncologists, and other professional organizations and licensing boards).
• Complete ILC specific curriculum for breast cancer nurse practitioners and PAs in collaboration with UT Southwestern and disseminate widely. ID another partner with which to develop curriculum targeting other clinician types.
• Develop and offer for CMEs two ILC curriculums: for breast imagers and for general radiologists.
• Reach out to associations such as the society of nurse oncologists through which to share general Ed. information about ILC.

3. Raise awareness of ILC and LBCA and need for more ILC research among clinicians/researchers

• Conduct at least one survey a year highlighting critical ILC treatment and detection/monitoring issues/develop abstract from results for submission to be invited to present a poster at a cancer conference.
• Develop a manuscript that uses data from across our past posters and seek publication and develop for poster.
• Develop and/or sponsor ILC-focused sessions for at least one major cancer conf. focusing on/or including breast cancer.
• Sponsor Ed session at ASCO 25
• Implement annual LBCA award for best 5 ILC abstracts among those selected to be presented as posters at SABCS
• Continue to outreach to breast cancer programs around the US (with letters that include PAAB as signatories) and urge them to share LBCA’s URL and Ed. ILC resources with patients and add ILC information content to their breast cancer information on their websites.
• Regularly provide LBCA’s online materials to SAB members to disseminate and provide them printed versions on request.
• Develop materials for LATs to bring to cancer centers in person and disseminate to breast cancer patient support departments, Breast program social workers and nurse navigators, and oncologists.
• Encourage and facilitate SAB members to use LBCA’s logo in their presentations related to ILC research
• Work with SEER to develop an annual special report on ILC incidence data by October 15, 2024.
• Seek changes to ACS annual facts and figures breast cancer data to include data on ILC.
• Conduct at least 1 meeting with SEER & MBC Alliance to develop method to collect/share breast cancer recurrence data.

4. Provide and keep updated educational materials about ILC for ILC community

• Develop downloadable resource about ILC and imaging for individuals living with early stage and metastatic ILC.
• Create at least two PSAs about clinical trial participation and create two PSAs raising awareness about ILC and LBCA.
• Disseminate the PSA(s) and make connections with other clinical trial resources

Goal 2: Be Go-To Source for ILC Research Findings and New Treatments/Clinical Trials

Objectives:
1. Update publications library with new work at least twice annually, and periodically cull to remove old publications, using criteria developed with SAB and SAB input.
2. Update website page highlighting SAB member current research (update every six months) and when possible, provide lay summary and interview with the SAB researcher and/or post a blog by the SAB member.
3. Maintain current list of clinical trials accepting ILC patient enrollment that are focused on or enriched for inclusion of patients with ILC.
4. Ensure that new ILC findings are publicized via all of LBCA media platforms and shared with the private ILC FB groups.
5. Identify ways to facilitate open access for articles published on ILC, including funding the open access cost of up to four studies in FY25.

Goal 3: Support ILC Patient Research Advocacy and Ultimately, ID and implementation of ILC-specific NCCN guidelines

Objectives:
1. Develop, present, record and share on website at least six new Advocate Chats/year for patient advocates to provide tools and information for ILC awareness raising and research advocacy.
2. Maintain and expand ILC Advocate Registry for the purposes of a) volunteering to be paired with a researcher seeking a research advocate and b) connecting with other advocates in similar geographic locations. Publicize availability of ILC Advocate Registry to both researchers and ILC community at least once each year.
3. Continue to include language in new ILC research solicitations that LBCA issues that encourages applicants to build into their budgets reimbursement for patient advocates with whom they will work with on their research.
4. Share advocacy learning opportunities, as LBCA becomes aware of them, with the ILC Advocate network via email communication.
5. Assist interested ILC patient advocates to participate on breast cancer research consumer review panels (with letters of support, etc.)
6. Provide travel funding scholarships for up to 20 ILC advocates to attend travel to major breast cancer conferences via the LBCA Travel Scholarship Program. Require grantees to share on their write-ups of their experiences on LBCA website to aid others.
7. Assist SAB chair and other members in creating/publishing white papers on ILC-specific treatment and imaging techniques.
8. Initiate at least one letter writing campaign to NCCN to promote their adoption of lobular specific guidelines.
9. Continue to promote LAT initiative to provide opportunities for advocates to convene locally and/or on specific topics of interest to conduct ILC patient advocacy activities together.

Goal 4: Build Alliances Among U.S. and International Breast Cancer Advocacy Orgs to Jointly Promote/Support ILC research

Objectives:
1. Participate in ILC Symposium planning and develop and help fund the creation of wrap up session(s)/white papers.
2. Conduct at least two initiatives such as webinars or in person panels or awareness raising efforts with a sister breast cancer organization.
3. Assist SAB members to develop at least one multicenter collaboration around research initiatives (e.g., ILC data analysis, collaborative research grant proposals to pharmaceutical companies, standardizing ILC pathology, creating more ILC research models, etc.).
4. LBCA staff and representatives will continue to participate on DFCI patient advocate group, breast protocol group and ER+ group, SNMMI Patient Advocate Advisory Board, ACS Breast Cancer Round Table, ASCO Conquer Cancer Foundation Council, MBC Alliance working groups, Tigerlily Race Alliance Roundtable, NBCC C-4 Board, and other national boards or collaboratives to raise the issue of the need for more ILC research. Add one new collaboration during the fiscal year.
5. Consider development of a collaborative grant application with SAB members and member institutions to support ILC research (e.g., Department of Defense Consortium Grant, or other).

Goal 5: Promote and Fund ILC Research

Objectives:

1. Continue to fund ILC research in collaboration with other organizations including ASCO and AACR, and SNMMI, and contemplate new with Komen, BCRF, SBI, etc.