LBCA’s Volunteers Are Changing the World For Others with Lobular Breast Cancer!

Over the past nearly four years I have learned a lot about the various forms that advocacy and volunteerism can take, especially at a small grassroots organization like LBCA. The Merriam Webster dictionary defines advocate (n) as: one who supports or promotes the interests of a cause or group. And volunteer (n) as: a person who voluntarily undertakes or expresses a willingness to undertake a service. I would comfortably say that all volunteers with LBCA also meet the definition of “advocate,” whether one sees themselves as an advocate or not is not the point, but actions are what make all the difference. 

This past year, I have witnessed countless acts of passionate advocacy in the service of individuals facing an ILC diagnosis. LBCA advocates continue to tell their ILC stories, serve as active members on committees and volunteer advisory boards, and collaborate with scientists on research project proposals, studies, and publications. Volunteers support LBCA fundraising efforts by putting on fundraising events, donating their time and expertise on fundraising, and making meaningful financial donations to support the cause. And the scientists and clinicians LBCA has the honor to work with demonstrate their commitment to changing the lives of those with ILC every day in their professional lives and in the time they volunteer to support LBCA’s mission and vision-driven activities.

I have some exciting highlights from our volunteer advocate community to share. 

  • In June/July 2023, over 1400 survey respondents who have had ILC volunteered their time to share their experiences with surgery and surgical decision making. These responses were synthesized by LBCA staff and volunteers into abstracts and posters that were presented at two international conferences and just this month, again at AACR’s annual conference by a patient advocate fellow.  
  • In September 2023, LBCA launched its Local Advocacy Team initiative to facilitate individuals with lobular breast cancer who want to connect with others with ILC in their local area and conduct in person advocacy activities to raise awareness about ILC. With the support of an amazing volunteer coordinator, LBCA has helped one local team launch, and is helping another to launch soon. These teams are bringing new energy and innovative ideas on how to raise awareness on ILC in their own communities.     
  • This year LBCA supported 22 advocate opportunities to travel and learn at conferences or trainings: In July 2023, LBCA volunteers participated in the National Breast Cancer Consortium’s (NBCC) ProjectLEAD to sharpen their research and education advocacy skills; in September 2023, advocates traveled to Pittsburgh to the ILC Symposium to hear from the world’s leading researchers and clinicians in the field about ILC research, treatment, challenges, and developments; in December 2023, advocates traveled to the San Antonio Breast Cancer Symposium (SABCS), the largest annual breast cancer conference; and in May 2024, advocates will travel to DC to participate in the NBCC Advocate Leadership Summit. 
  • A committed special interest group formed focused on metastatic ILC. This group has strengthened the available resources on the LBCA website for those living with metastatic ILC and have spearheaded partnerships to expand access to support services specifically for those living with mILC. 
  • Advocates conducted outreach to researchers, inquired about how research applies to ILC, and visited research labs. 
  • LBCA volunteers collaborated with researchers and published studies shining light on how the lack of clinical trials including patients with ILC is limiting development of treatments, and how breast radiologists agree that better imaging beyond mammography is warranted for ILC patients. Click the links to read these articles. 
  • Volunteers supported the development of patient facing resources such as the new ILC Brochure and Frequently Asked Questions on Tissue Donation, and are working on developing additional resources. 

One of my favorite quotes by Margaret Mead is “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” One of the great gifts of working at this small but mighty organization is that I get to see this quote come to life every day. On behalf of LBCA, we thank all advocates and volunteers for their efforts to change the world for those affected by ILC. 

With gratitude,
Mason Mitchell-Daniels
LBCA Chief Operating Officer and Volunteer Coordinator

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