When I was diagnosed with Lobular Breast Cancer (ILC) in 2011 there was very little information available to patients to learn about their disease and little interest in research. Times have changed thanks to advocacy by patients in partnership with researchers committed to unlocking the secrets of lobular breast cancer and improving patient care.

Today, your donations and volunteer time can directly support LOBULAR Breast Cancer research and advocacy.  Please explore these opportunities to support lobular breast cancer research and advocacy and consider directing your donations and time to support lobular breast cancer research and patient-centered organizations.  You can download and share a .pdf file of this list or access it on Google Docs.

Lobular Breast Cancer Organizations

Lobular Breast Cancer Alliance (LBCA):  United States 

Guided by patients with invasive lobular carcinoma (ILC) and committed researchers, LBCA is focused on ILC education and raising awareness of this understudied disease and fostering patient research advocacy to promote more ILC research. LBCA funds ILC research grants for young investigators and is growing capacity to support further ILC-specific research. LBCA welcomes volunteers and monetary gifts to support its mission.  Lobularbreastcancer.org

Lobular Breast Cancer UK (LBCUK): United Kingdom

Launched in 2021, this patient-driven organization with a medical and scientific advisory board of lobular breast cancer experts, provides lobular information & knowledge development, patient advocacy & support, research & research funding. LBCUK welcomes donations, commercial partnerships and in-kind support. Lobularbreastcancer.org.uk

Lobular Ireland: Ireland

Lobular Ireland is a network of volunteer patient-advocates with lobular breast cancer working with breast cancer researchers and clinicians. Lobular Ireland advocates for research into ILC and raises awareness, understanding and patient education. Lobular Ireland welcomes contacts from patients, survivors and researchers.  Lobularireland.com

The Dynami Foundation: Plymouth Michigan, USA 

Dynami was launched in 2016 to further the research, treatment, and prevention of breast cancer. To date Dynami has raised 1.6 million dollars through an annual signature event Uncork for a Cure in Detroit, MI. Dynami’s research grant program is focused on ILC, and they have funded ILC research grants at the University of Michigan Rogel Cancer Center in partnership with UPMC researchers and invited collaborators. Dynami welcomes donations, event sponsorships and volunteers. Dynamifoundation.org

Lobular Breast Cancer Research Funds 

UCSF Lobular Breast Cancer Research Program: University CA San Francisco, USA

Principle investigator and surgeon Dr. Rita Mukhtar has dedicated her research to advance ILC research and innovate targeted treatments that improve patient lives and outcomes with a focus on ILC diagnostics and treatment strategies.  A direct fund supporting the lobular breast cancer research program ensures all contributions support this work. lobularbreastcancer.ucsf.edu

Lobular Breast Cancer Research Fund: The Cleveland Clinic, Ohio USA

The Cleveland Clinic has a dedicated fund to support lobular breast cancer research.  Donate to the fund online directly.  For more information or to send a check, contact the Cleveland Clinic Philanthropy Institute Attention: Chelsea Knowles P.O. Box 931517 Cleveland, OH 44193-1655 and write “Lobular Breast Cancer Research Fund” on the memo of your check.  give.ccf.org/lbc 

The Sikora Lab: University Colorado Anschutz Medical Campus, Aurora CO USA

The Sikora Lab is led by basic and translational researcher Matt Sikora, PhD and focuses on lobular carcinoma of the breast, in particular the role of the estrogen receptor in ILC.  A dedicated lobular breast cancer research fund is available for those who want to specifically support this lab’s ILC research. Patients and advocates in the Denver, Front Range, or Mountain West region interested in opportunities for ILC advocacy, ILC education, or research engagement and support can contact Dr. Sikora.  Sikoralab.com

ILC Breast Cancer Research Fund: Pittsburgh Pennsylvania, USA

This dedicated fund supports the ongoing lobular breast cancer research being conducted in the Lee/Oesterreich Lab by Drs. Steffi Oesterreich and Adrian Lee, part of the Womens Cancer Research Center, a collaboration between UPMC Hillman Cancer Center and Magee-Womens Research Institute. For more information or to send a check contact the UPMC Hillman Cancer Center Development Office, Attn: Colleen Straub UPMC Cancer Pavilion, Suite 1B 5150 Centre Avenue Pittsburgh, PA 15232 412-623-4777 and write “ILC Breast Cancer Research Fund” on the memo.  Or donate online and select “other” for donation designation and write in “ILC Breast Cancer Research Fund”. Leeoesterreich.org

Research Consortiums

European Lobular Breast Cancer Consortium (ELBCC):  Europe

ELBCC launched in 2018 as a platform to bring together discovery scientists, translational researchers and clinical experts with the goal to improve the understanding, diagnosis, treatment and prognosis of those with Invasive Lobular Breast Cancer.  Currently centered in Europe, it plans to expand to international collaborators.  ELBCC is hosting the 2022 International ELBCC/Lobsterpot ILC Symposium and SummerSchool in Utrecht, The Netherlands June 19-22, 2022 and welcomes corporate, philanthropic and individual event sponsorships.  Patient advocates living in the EU can contact ELBCC if they are interested in research advocacy.  Elbcc.org

Is something missing or out-of-date? 
Please share updates in the comments or by emailing lpateseattle (at) yahoo (dot) com

Download and share this resource list as a .pdf file here  Access on Google Docs here.

Created: April, 2022