After much thought about how to expand the work of Lobular Breast Cancer Alliance (LBCA) from the national to the local level, LBCA has developed and will begin supporting local advocacy opportunities in early 2024.
The purpose of the newly forming LBCA Local Advocacy Teams is to enable individuals who have or have had invasive lobular carcinoma (ILC) and who live within a particular geographic area, such as a major US city, to gather with others in that area to plan and conduct ILC patient advocacy activities as a group.
Executive Director Laurie Hutcheson explained, “For quite some time, people have been reaching out to LBCA who want to volunteer. Until recently, we have focused primarily on nationally-facing activities to help spread the word about ILC and the need for more research. We have provided materials for individuals to use on their own and information about how to conduct research or educational advocacy, and about how to connect with ILC researchers. However, we know that there are a lot of people with a lot of passion about the mission who are not comfortable doing things in their own communities by themselves.”
With the formation of the Local Advocacy Teams, LBCA will be able to extend guidance and resources to support local activities and to facilitate connecting individuals with others with ILC and/or who are working on ILC research in their local areas.
LBCA will be working with volunteer and ILC patient advocate Kathleen Moss who has agreed to coordinate the launch of the groups and be the liaison between LBCA staff and each Local Advocacy Team. Kathleen is particularly enthusiastic about this role because she had been unsuccessful this past year in finding others with whom to advocate about the need for more research and patient education in her part of Oregon. She noted that “patient advocates are hard to find.”
Kathleen brings a background in volunteer training and support, mostly in the social services sector, to this important new role. Beginning in January, LBCA will launch the formal Local Advocacy Team application process. To apply, each potential new Local Advocacy Team will need a self-identified leader, who LBCA can appoint to be the LBCA Local Advocacy Team ambassador, and at least one other committed volunteer. We’ve already begun recruiting ambassador candidates and think that the first sites to emerge may be in the Northwest and the Southern regions of the US.
Laurie is excited about the prospect of growing ILC advocacy efforts exponentially through these new groups. She noted, “The energy among the ILC patient advocate community is phenomenal. We are going to be able to get so much more done!”
She also explained the hope is that as teams form and determine what their advocacy work will be, they gel and then flourish with the strength and determination that comes with camaraderie and the added creativity generated when people assemble to brainstorm and are willing, in the safety of a group, to try new ways of doing things.
LBCA will bring the teams together periodically so that they can share and learn from one another as they evolve and as new groups form. In anticipating the impact these groups will have, Kathleen commented, “Not every cancer patient wants to stick around to find working roles for themselves in ‘cancerland’ long term, but with these new local opportunities that will include mentorship by others who are more experienced, we’re hoping we can inspire and help build up strong advocates who may not have realized that they could do this work.”
Stay tuned for more information about the groups that will be forming first. Those interested in leading or joining a Local Advocacy Team in the US can reach out to Kathleen.
