The Lobular Breast Cancer Alliance Inc. (LBCA) has just transitioned from being a small, all volunteer-led, fiscally sponsored project to becoming a high-impact, independent charitable organization focusing on advocacy and desperately needed funding for invasive lobular carcinoma (ILC) cancer research. As an independent organization, we expect to accelerate our ability to promote and fund research and get one step closer to eradicating ILC permanently. We are currently a board of five and seek to invite a few more qualified, motivated, and passionate individuals who are dedicated to our mission who will help us sustain what we have built so far, expand to achieve all we strive to accomplish, and to make an impact.
Background on ILC and LBCA
Until 2015, ILC, the cancer subtype of 10-15% of all women diagnosed in the US each year (about 40,000 annually), and more common than ovarian cancer, was not typically thought to be different from invasive ductal carcinoma (IDC), particularly among treating clinicians. Now it is better known that ILC has some distinct biological characteristics that need to be better understood. And clinicians are becoming more aware of the ways in which lobular breast cancer is different and acknowledging the need for more ILC-specific, targeted treatments to be developed.
- ILC is referred to as the “sneaky breast cancer” because the tumors typically do not form as lumps making them extremely hard to detect through routine screening, and as a result a disproportionate number of lobular tumors are not found until they are larger, are at later stages or in some cases, have metastasized. It is also harder to surgically find and remove all of the tumor cells, and women frequently need more than one lumpectomy to do so;
- ILC appears to frequently metastasize to different organs from those where ductal tumors metastasize, and
- There is evidence ILC will recur much later than IDC in some cases, though it is not clear yet why. This may suggest a poorer prognosis for some individuals diagnosed with ILC. Unfortunately, there has been little research to-date on lobular disease, so the standard of care is still simply that for ductal carcinoma. Unfortunately, there has been little research to-date on lobular disease, so the standard of care is still simply that for ductal carcinoma.
LBCA is a five-year-old, national group that was created by patients with ILC who were desperate for more information, incensed that their different cancer subtype was thought of and treated just like ductal, and compelled to spread the word about ILC and advocate vigorously for more ILC research. In 2020, LBCA began the transition from being strictly volunteer-run to being an independent charitable organization with a small paid staff and a handful of volunteers who support our mission and vision. We work entirely remotely.
LBCA engages patients, clinicians, and researchers to increase knowledge of lobular breast disease and promote lobular breast cancer research. Working with the guidance of an international, expert scientific advisory board of 15 breast cancer researchers and clinicians, a 14-person patient advocate advisory board and through growing collaborations with other breast cancer advocacy organizations in the US and internationally, LBCA provides a platform for ILC research, maintains a library of current lobular breast cancer studies, and identifies clinical trials and research advocacy opportunities with a focus on lobular breast disease.
LBCA provides and disseminates widely basic, current educational information about ILC including early stage and metastatic lobular breast cancer, to enhance understanding about how lobular is different from other breast cancer sub-types, and share any new knowledge gleaned from recent research. LBCA aims to empower patients to be more informed partners in their self-care and treatment and help clinicians to be more informed and confident in the treatment plans they promote. LBCA also fosters dialogue among clinicians and researchers to address challenges of detecting and treating ILC, discuss groundbreaking findings, and identify new ILC research priorities and opportunities for collaboration. We regularly feature blogs and interviews with top ILC researchers on the LBCA website and our YouTube channel.
LBCA Mission and Vision
As the only organization in the US dedicated to Invasive Lobular Breast Cancer (ILC), LBCA’s mission is:
to make all who are touched by 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.
LBCA’s Vision is a world in which lobular breast cancer is found early, treated effectively, and eradicated permanently.
LBCA’s Organizational Status
LBCA is a registered public charity with 501(c)(3) tax exempt status.
The Board of Directors We Seek for LBCA
LBCA seeks board members who may have been directly impacted by ILC, who are deeply caring, and who will be dedicated to helping LBCA promote and fund ILC research. In addition to the standard roles and responsibilities of any non-profit board member (below), our specific expectations of LBCA Board of Directors are as follows:
- Make the Lobular Breast Cancer Alliance a top priority.
- Serve actively.
- Prepare for and attend and conscientiously participate in quarterly two-hour Board meetings virtually and one meeting/year in-person and be available for phone consultation outside of meetings.
- Participate in one or more committees that may arise.
- Contribute individual expertise and knowledge in the deliberations of the Board and act as a resource for staff when called upon.
- Be an ambassador and advocate for the Lobular Breast Cancer Alliance.
- Understand and articulate LBCA’s mission, vision, and goals of the organization.
- Show support for LBCA’s policies and decisions.
- Engage, as needed with LBCA’s volunteer network – including advocates and scientific advisors – by participating when possible, in volunteer-driven events.
- Engage actively in meeting the LBCA’s financial goals.
- Assist in the cultivation of prospective donors and sponsors including attending special events as a representative of the Board.
- Facilitate financial opportunities and other productive relationships for the organization.
- Have the financial acumen to read and understand LBCA’s financial statements and to otherwise help the board fulfill its fiduciary responsibilities.
- Make a personally meaningful financial contribution(s) to the organization each year without being asked.
- Other expectations
- Follow LBCA’s bylaws, policies, and board resolutions.
- Sign an annual conflict-of-interest disclosure and update it during the year if necessary, as well as disclose potential conflicts before meetings and actual conflicts during meetings.
- Maintain confidentiality about all internal matters.
- Directors are expected to serve a three-year term and may serve up to two consecutive three-year terms before a requisite one-year break.
The Standard Roles of a Non-Profit Board of Directors
The standard responsibilities of non-profit board members:
- The board of directors is the entity that is legally responsible for the conduct and performance of the nonprofit organization. Traditionally, this legal responsibility has been viewed as having three fundamental legal duties which have been stated as:
- Duty of Care, which means acting in good faith consistent with what the board or individual board member truly believes is in the best interest of the organization;
- Duty of Loyalty, which means doing what is in the best interest of the organization; and
- Duty of Obedience, which means honoring and acting consistently with the requirements of applicable laws and the organization’s mission, bylaws, policies, and other standards of appropriate behavior. Fundamentally, board members must honor these standards of behavior in all decisions and actions related to the organization.
We believe that serving on our Board of Directors will be an extraordinary opportunity to be part of something great that will help change the future for women diagnosed with lobular breast cancer.
Health Care Advocacy, Education, and Research
Job Title: Volunteer Board Member
Desired Skills and Expertise
The ideal board candidate has prior nonprofit board member experience and will provide a resume that highlights former board member activity and employment history. Interested applicants should be prepared to provide two character and two work-related references.
Interested individuals please contact: Laurie Hutcheson at: Info@lobularbreastcancer.org