The Lobular Breast Cancer Alliance (LBCA) is on the brink of going 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 breast cancer (ILC) research, getting us one step closer to eradicating ILC permanently. We seek a qualified, motivated, and passionate board of directors dedicated to our mission to help us go the distance and make an impact.
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 recognized as different from invasive ductal carcinoma. Now it is better known that ILC has some distinct characteristics that really need to be better understood.
- 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 or 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 some evidence ILC will recur much later than IDC and this may suggest a poorer prognosis for those diagnosed with ILC. Unfortunately, there is still little awareness even among oncologists and pathologists of the challenges posed by ILC, and little research to-date on lobular disease, such that the standard of care is still simply that for ductal carcinoma.
The research on ILC has been scarce and so far, despite being a different breast cancer subtype, not enough is known for there to be lobular-specific treatment protocols.
LBCA is a three-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 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 14 breast cancer researchers and clinicians, 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 not yet an independent, charitable organization but is a fiscally sponsored organization with 501(c)(3) tax exempt status as a project of Social and Environmental Entrepreneurs (SEE), a registered public charity. All support and funding for LBCA’s operations comes from generous donors, including patients with lobular breast disease and their loved ones, grants, foundations, and contributions from other 501(c)(3) not for profit organizations. LBCA has filed for incorporation and expects to become an independent 501c3 by the end of 2021.
The Standard Roles of a Non-Profit Board of Directors
- Recruit, supervise, retain, evaluate, and compensate the executive director.
- Create a strategic plan and provide direction for the organization.
- Establish a policy-based governance system.
- Govern the organization and the relationship with the Executive Director.
- Have a fiduciary duty to protect the organization’s assets and member’s investment.
- Monitor and control function, i.e., the board is responsible for the auditing process.
The Board of Directors We Seek for LBCA
We expect that our board members will champion the importance of exceptional board leadership and conduct in order to ensure effectiveness. In addition to the standard roles and responsibilities of any non-profit board member, we also expect our board members to be active advocates and ambassadors for LBCA and individuals who will fully engage in identifying and securing the financial resources and partnerships necessary for LBCA to advance its mission.
Health Care Advocacy, Education, and Research
Job Title: Volunteer Board Member
Job Description/Specific LBCA Board Member Expectations
LBCA seeks board members who will champion LBCA’s mission, who may have been directly impacted by ILC, and who are deeply caring and will be dedicated to promoting and helping LBCA fund ILC research. 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. Our 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 monthly two-hour Board meetings virtually and one in-person meeting/year, 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.
Desired Skills and Expertise
The ideal board candidate should have 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.
Contact: Laurie Hutcheson at: Info@lobularbreastcancer.org