Photos and text used with permission of
Mr. Tony Romeo.
Lilla did not turn inward with her progressive disease, but instead reached out to share her life experiences with a voice of urgency and authenticity, and with a grace and courage that could not fail to impress those who worked with her.
She served as an advocate on a Department of Defense (DoD) Breast Cancer Research Program (BCRP) Center of Excellence (COE) Award, studying brain metastases under the direction of Dr. Patricia Steeg. Regarding Lilla's speech at the last annual meeting of the COE, scientist Patricia McGowan wrote: "Your talk about your experiences was moving and incredibly motivating. If I have a bad day or an experiment that fails, my thoughts turn to you and I am inspired to continue, and remember why we are all working together on this."
Lilla worked until the end of her life trying to bring more attention to metastatic disease, through public avenues such as The Metastatic Breast Cancer Network. She reached out to others in similar situations through the MetastaticBreastCancerCommunity.org website, and on the hotline at SHARE, a self-help organization for breast and ovarian cancer, where she also participated in SHARE LEADers, an advocacy training program. She distributed educational brochures to oncology nurses around the country and, at the time of her death, was working on a Spanish language version for the COE consumer website BrainmetsBC.org.
She was very proud of testifying before the Oncologic Drugs Advisory Committee on erythropoietins, and Lilla was quoted in the New York Times. Her words had an impact at an American Association for Cancer Research workshop on brain metastases and also at a research think tank discussing clinical trials for brain metastases.
Lilla served as a consumer peer reviewer for the DoD BCRP and was honored to be chosen as an Ad hoc Reviewer for the BCRP programmatic review this past March, which she considered a highlight of her advocacy. Soon after, the National Breast Cancer Coalition Annual Advocacy Training Conference in May bore witness to the intensity of her commitment. Weeks before her death, struggling with a failing voice, Lilla moderated a workshop on PARP inhibitors with a determination that moved each and every person in the room.
Lilla will be missed, but her advocacy and motivation continue to inspire all who knew and worked with her in the fight to eradicate breast cancer.