GOLD2023

Lobular Breast Cancer Alliance Inc.

A world in which lobular breast cancer is found early, treated effectively, and eradicated permanently

aka LBCA   |   White Horse Beach, MA   |  https://www.lobularbreastcancer.org

Mission

To make all who are touched by invasive lobular breast cancer (also referred to as invasive lobular carcinoma or “ILC”) aware of its unique characteristics and the critical need for more ILC research; to be the go-to source for information on ILC studies, clinical trials and educational tools; to foster partnerships among patients, scientists, clinicians, and breast cancer organizations to increase dialogue about ILC and research advocacy; and to fund vital ILC research. We envision a world in which lobular breast cancer is found early, treated effectively, and eradicated permanently.

Notes from the nonprofit

Founded by patient advocates in 2017 as part of a larger organization, we commenced operations as our own free-standing public charity focused specifically on invasive lobular breast cancer (ILC) in December 2021, with six months of operations between then and our fiscal year ended June 30, 2022. As our organization grows, we plan to make grants to fund research on the detection and treatment of ILC, and to continue supporting patient advocate involvement in ILC research and the need for greater awareness of this disease. We will continue to expand on our efforts to bring scientifically-vetted information about ILC to the public, clinicians and the scientific community through the efforts of our staff and patient advocate volunteers.

Ruling year info

2021

President & Executive Director

Laurie Hutcheson

Vice President & Chief Operating Officer

Mason Mitchell-Daniels

Main address

PO Box 200 119 White Horse Rd.

White Horse Beach, MA 02381 USA

Show more contact info

EIN

86-2260246

NTEE code info

Breast Cancer (G32)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Invasive Lobular Carcinoma (ILC) is a sneaky form of breast cancer, because it usually does not form a lump that can be felt or clearly seen on mammograms. ILC tumors often are not detected until they have grown large or metastasized. ILC is more common in women than cancers of the kidney, brain, pancreas, liver, or ovaries. But, remarkably, research on ILC is in its infancy! In fact, despite many differences from the more common invasive ductal breast cancer (IDC), oncologists treat it just like IDC. Patients with ILC know that this is not okay and needs to change! This is what compelled a handful of patients with lobular breast disease to form LBCA in 2017. Since 2017, LBCA has been the source of truth in the public’s understanding of ILC and is the only organization in the US dedicated to spreading the word about, studying and eradicating this disease. Each day patients with ILC reach out and find current information about ILC and comfort in the LBCA community.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Lobular Breast Cancer Information and Education

Our website (www.lobularbreastcancer.org) is the primary platform through which the most current and important information about ILC research and treatment is shared with patients, their family members, caregivers, clinicians and researchers. It is also one of the few comprehensive sources of publicly accessible and scientifically vetted information on invasive lobular carcinoma (ILC) worldwide. LBCA also publishes an e-newsletter to which visitors to our website can subscribe, typically monthly, delivered by email. The newsletter provides news about our charitable activities and significant ILC developments and events, and encourages readers to access our website for more information about the disease and ways to support our mission through donations and volunteering. LBCA also maintains and routinely posts on a twitter account, a Facebook page, a YouTube channel and a LinkedIn account, and provides grants to support ILC research and ILC patient advocacy.

Population(s) Served

Where we work

Awards

GRASP Choice Award (Review of Research Summary and Poster) 2022

GRASP Cancer

Affiliations & memberships

Metastatic Breast Cancer Alliance 2022

National Breast Cancer Coalition 2022

European Lobular Breast Cancer Consortium 2022

American Association for Cancer Research (AACR) 2021

Conquer Cancer Foundation of the American Society of Clinical Oncoloby (ASCO) 2021

Society of Nuclear Medicine & Molecular Imaging (SNMMI) 2022

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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

Financials

Lobular Breast Cancer Alliance Inc.

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Operations

The people, governance practices, and partners that make the organization tick.

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Lobular Breast Cancer Alliance Inc.

Board of directors
as of 01/18/2023
SOURCE: Self-reported by organization
Board chair

Laurie Hutcheson, MS

Tracy Cushing, MD, MPH

Associate Professor of Emergency Medicine at the University of Colorado

Tanya Martin-Dick

Vice President at Union Bank and Trust, Lincoln, NE

Deb Mueller, MD

Professor of Surgery at the University of Texas Health at San Antonio

Kathryn Krantz, MD

Ramlah Nehring, PhD

Head of Strategy and Transactions at Roche Diagnostics

Robert Oakes, CPA, MBA

Senior Principal at Slalom Consulting

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 11/22/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Gender identity
Female

The organization's co-leader identifies as:

Gender identity
Female

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data