LOBULAR BREAST CANCER ALLIANCE INC
Programs
ILC Awareness and Research Initiatives
LBCA COMMENCED OPERATIONS IN THE MIDDLE OF ITS FISCAL YEAR, AFTER RECEIVING ITS TAX EXEMPTION. DURING THIS 6-MONTH PERIOD, LBCA:- PRODUCED 3 VIDEOS PROMOTING AWARENESS & RESEARCH OF ILC, HOSTED 3 PATIENT ADVOCACY WEBINARS & HAD APPROX. 37,500 WEBSITE VISITS;- SURVEYED METASTATIC ILC PATIENTS & SUBMITTED ABSTRACT FOR PUBLICATION AT THE LARGEST US BREAST CANCER RESEARCH SYMPOSIUM;- PRESENTED EDUCATIONAL WEBINARS ON IMAGING DIAGNOSTIC TOOLS, STANDARDIZATION OF ILC PATHOLOGY & METASTATIC ILC;- PROVIDED ILC INFORMATION & COLLABORATED WITH THE AMERICAN CANCER SOCIETY (FOR THE BREAST CANCER ROUNDTABLE), THE NATIONAL BREAST CANCER COALITION, THE EUROPEAN LOBULAR BREAST CANCER CONSORTIUM, THE SOCIETY OF NUCLEAR MEDICINE & MOLECULAR IMAGING, AND THE (CONT'D IN SCHEDULE O) METASTATIC BREAST CANCER ALLIANCE (FOR ITS "HERE ALL YEAR AND "AMPLIFYING BLACK VOICES ACROSS CANCER" CAMPAIGNS);- INCREASED READERSHIP OF LBCA'S FREE E-NEWSLETTER TO APPROX. 4,500 SUBSCRIBERS, & PUBLISHED TWO BLOGS ON ILC TREATMENT;- PROVIDED LAY SUMMARIES OF ILC RESEARCH PRESENTED AT THE LARGEST US BREAST CANCER RESEARCH SYMPOSIUM IN SAN ANTONIO;- CO-SPONSORED THE INTERNATIONAL ILC SYMPOSIUM IN THE NETHERLANDS, & FUNDED TRAVEL COSTS TO ENABLE ATTENDANCE BY PATIENT ADVOCATES AND RESEARCHERS, WHERE LBCA CO-ORGANIZED AND PARTICIPATED IN PATIENT ADVOCATE PRESENTATIONS TO RESEARCHERS; AND- MADE THREE GRANT-MAKING AGREEMENTS TO FUND UP TO $177,500 IN RESEARCH GRANTS IN THE UNITED STATES DURING 2023GeographiesNot indicatedDatesJul 1, 2021 – Jun 30, 2022Source990No causes providedNo populations provided–$117.9KProgram 1 [2025]
DURING THE LAST FISCAL YEAR, LBCA:-LAUNCHED FIRST OCTOBER 15TH GLOBAL LOBULAR BREAST CANCER AWARENESS DAY IN COLLABORATION WITH ADVOCATES AND RESEARCHERS AROUND THE WORLD AND WORKED WITH A PR COMPANY TO RAISE AWARENESS OF ILC AND LBCA IN SEVERAL KEY METROPOLITAN AREAS AROUND THE US. WORKED WITH THREE MAJOR CANCER CENTERS (DANA FARBER, MEMORIAL SLOAN KETTERING AND MD ANDERSON) TO ENCOURAGE THEIR IMPLEMENTING OCT 15TH ILC AWARENESS RAISING EVENTS AND LAUNCHING THEIR OWN ILC PROGRAMS-SUPPORTED TWO AND LAUNCHED A THIRD LOCAL ADVOCACY TEAM (LAT) IN CASCADIA (OREGON AND WASHINGTON STATE REGION) TO INCREASE LBCA'S WORK WITH ADVOCATES CONDUCTING EDUCATION AND RESEARCH ADVOCACY IN THEIR COMMUNITIES (CONT'D IN SCHEDULE O) -CREATED ILC INFO GRAPHICS FOR CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) AND FOR NATIONAL CANCER INSTITUTE (NCI) BREAST CANCER PATIENT FACING PAGES -PRODUCED TEXT FOR REPORT ON ILC AND NCI SEER ILC INCIDENCE DATA THAT WAS PUBLISHED ON THE NCI CANCER STAT FACTS WEBPAGE AND WILL BE UPDATED ANNUALLY.-PRODUCED PATIENT RESOURCE DOCUMENT ON LOBULAR BREAST CANCER MYTHS AND FACTS-FUNDED ILC RESEARCH GRANTS WITH SOCIETY OF NUCLEAR MEDICINE AND MOLECULAR IMAGING (SNMMI), ASCO / CONQUER CANCER FOUNDATION, AND AMERICAN ASSOCIATION FOR CANCER RESEARCH. FUNDED/ISSUED IN COLLABORATION WITH SUSAN G. KOMEN FIRST EVER METASTATIC ILC RESEARCH GRANT SOLICITATION IN MEMORY OF LBCA FOUNDING ADVOCATE JULIA K. LEVINE-HELPED AUSTRALIA LOBULAR BREAST CANCER PATIENTS FORM LBCA-AUS FOR PATIENT ADVOCACY AND HELPED BRAZILIAN CLINICIANS DEVELOP TRAINING CURRICULUM ON ILC FOR MDS.-SUPPORTED LAUNCH OF TWO VIRTUAL SUPPORT GROUPS FOR INDIVIDUALS WITH METASTATIC ILC-CO-SPONSORED AND PRESENTED POSTER ON LBCA'S OCTOBER 15TH MOVEMENT AT ILC SYMPOSIUM IN LEUVEN, BELGIUM IN SEPTEMBER 2024-PRODUCED AND PRESENTED POSTER ON ILC PATIENT EXPERIENCE WITH SURGICAL TREATMENT PLANNING IN DECEMBER AT SAN ANTONIO BREAST CANCER SYMPOSIUM 24-DEVELOPED AND SHARED ON WEBSITE AND SOCIAL MEDIA LAY SUMMARIES OF ALL ILC POSTERS PRESENTED AT SABCS 24, TO MAKE THE RESEARCH PRESENTED ACCESSIBLE TO LAY AUDIENCES-INITIATED, FUNDED AND AWARDED MERIT SCHOLARSHIPS (TO COVER CONFERENCE ATTENDANCE TRAVEL COSTS) FOR TOP FIVE BEST ILC RESEARCH POSTERS PRESENTED AT SABCS24 VIA ADMINISTRATIVE PARTNERSHIP WITH AACR. DEVELOPED AND SHARED ON WEBSITE/NEWSLETTER, LAY SUMMARIES OF 25 ILC RESEARCH POSTERS PRESENTED AT SABCS INCLUDING MERIT WINNERS.-MANAGED WEBSITE WITH (EVER-INCREASING HITS) THAT PROVIDES DETAILED INFORMATION FOR THE PUBLIC ABOUT INVASIVE LOBULAR BREAST CANCER (ILC), ILC RESEARCH, CLINICAL TRIALS AND PATIENT ADVOCACY OPPORTUNITIES. -HOSTED 4 WEBINARS FOR ILC PATIENT ADVOCATES ON RESEARCH AND OTHER TOPICS, AND PROVIDED 17 TRAVEL SCHOLARSHIPS TO PATIENT ADVOCATES TO ATTEND TRAININGS AND CONFERENCES-RELEASED 2 ILC CURRICULUMS FOR CLINICIANS AVAILABLE FOR VIEWING AS WEBINARS FOR CMES ON MEMORIAL SLOAN KETTERING (MSK) CANCER CENTER EDUCATIONAL PORTAL-SPONSORED SCIENTIFIC ADVISORY BOARD MEETINGS TO INVOLVE ILC RESEARCHERS IN ADVOCACY AND IN THE DEVELOPMENT OF THE INFORMATION LBCA DISSEMINATES-SPONSORED PATIENT ADVOCATE ADVISORY BOARD MEETINGS TO INVOLVE ILC PATIENT ADVOCATES IN ILC AWARENESS RAISING ACTIVITIES AND STRATEGIC PLANNING-PUBLISHED MONTHLY NEWSLETTER REACHING OVER 7,200 SUBSCRIBERS-ADDED 60+ NEW ILC STUDIES TO THE JULIA K. LEVINE ILC PUBLICATIONS LIBRARY ON THE LBCA WEBSITEGeographiesNot indicatedDatesJul 1, 2024 – Jun 30, 2025Source990No causes providedNo populations provided–$673.8K
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