Lung Cancer Foundation Creates Patient-Led Advisory Board
Patients and caregivers join ALCF leadership to enhance patient programs and services
SAN CARLOS, Calif. (August 26, 2015) — Three years ago, at age 28, Emily Bennett Taylor was diagnosed with Stage IV lung cancer. Emily was a state track champion, a collegiate volleyball player and had never smoked a day in her life. After the initial shock, Emily reached out to the Bonnie J. Addario Lung Cancer Foundation (ALCF), asking for education, support and encouragement in the face of the devastating survival statistics. Today, Emily is 2 1/2 years No Evidence of Disease (NED), serves as a patient advocate and spokesperson for the ALCF and is a founding member of the foundation’s newly launched Addario Patient Care Advisory Board (APCAB).
“Just 3 years ago I was struggling with a new diagnosis, devastating survival rates and a complete lack of support for lung cancer patients,” said Emily. “Through my involvement in the APCAB I am able to help drive patient-focused goals and services, inspired by a patient perspective. I am honored to have a seat at the table where decisions are being made and using my experience to help guide the services the ALCF offers to everyone impacted by this devastating disease.”
Emily is one of 14 patients and caregivers who have committed to serve on the APCAB. The APCAB is a patient-led movement to drive better outcomes for lung cancer patients through awareness, education and shared experiences. APCAB members will be engaged in all aspects of the ALCF, from enhancing mission-based work, to providing feedback on patient data sharing and access, disseminating educational materials and research results, and marketing and outreach to patients. Most importantly, the APCAB will advocate patient needs and priorities to the general public and ALCF supporters.
“We are thrilled to put patient input and guidance at the forefront as we determine new programs, services and ways to connect directly with patients and help guide their care and treatment,” said Bonnie J. Addario, Stage IIIB lung cancer survivor and founder of the ALCF. “The APCAB will have an important role in educating patients, caregivers and the general public about the value of clinical trials, genomic testing, early detection, health care access and other important decisions facing lung cancer patients today.”
Current APCAB patient members include:
· Cathy Parese, Stage IA Non-Small Cell Lung Cancer
· Chris Newman, Stage IV Non-Small Cell Lung Cancer
· Elizabeth Lacasia, Stage IIIB/IV Adenocarcinoma Lung Cancer
· Emily Bennett Taylor, Stage IV Adenocarcinoma Lung Cancer
· Janet Freeman-Daily, Stage IIIA Non-Small Cell Lung Cancer
· Jeff Julian, Stage IV Non-Small Cell Lung Cancer
· Sally Samuels, Stage IA Non-Small Cell Lung Cancer
· Sandy Jauregui, Stage IV Non-Small Cell Lung Cancer
· Taylor Bell Duck, Stage I Carcinoid Lung Cancer
· Tom Mundy, Stage IV Squamous Lung Cancer
· Tricia Hartner, Stage IB Non-Small Cell Lung Cancer
In addition, Mandie Hiznay and Jaimi Julian Thompson will serve on the APCAB as caregiver members. Mandie’s son Matthew was diagnosed with lung cancer at age 24 and Jaimi’s brother Jeff was diagnosed at age 39.
“This is a critical time for all cancer patients, particularly lung cancer patients,” said Jeff Julian, Stage IV lung cancer patient, head coach at Rose Bowl Aquatics, former Olympic Trials finalist and APCAB member. “Lung cancer patients face stigma every day and have to fight for awareness, education and resources. The APCAB values the patient voice and puts us at the forefront of the conversation. It is an honor to be involved with the ALCF in this capacity and help drive better research, better funding and better outcomes for all lung cancer patients.”
For more information about the APCAB and the ALCF’s services visit www.lungcancerfoundation.org.