Patient & Caregiver Advocate Board

 
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Melinda Bachini

Cholangiocarcinoma Survivor

Melinda Bachini is a nine-year survivor of stage IV cholangiocarcinoma. She has had great success with a clinical trial using Adoptive Cell Therapy at the National Cancer Institute under Dr. Steven Rosenberg. Melinda is married and the mother of six children, and is passionate about patient advocacy. Her position as Advocacy Coordinator for the Cholangiocarcinoma Foundation allows Melinda to interact, support, and educate others touched by this cancer. Melinda completed the Focus on Research program through Research Advocacy Network. Melinda serves as a patient advocate for the NCI Hepatobiliary Task Force, NCI Patient Advocate Steering Committee, ECOG-ACRIN GI Committee, and ECOG-ACRIN Cancer Research Advocacy Committee. She also participated as a panelist in the Cancer Moonshot – Community Oncology Event at the White House.

Leslie Burns

leslie burns

Colorectal and Lung Cancer Caregiver

For over 30 years, Leslie has been both a senior underwriter and an event planner; however, her most fulfilling work has been with patients, caregivers, and nonprofit organizations. In her community, she has led fundraising teams and various volunteer projects, but in 2008, her life changed. She lost her loving husband of 27 years to colon cancer. Six months later, her beloved mother passed from lung cancer. For her, life took a different turn. Now, she dedicates herself to speaking on behalf of and planning events for cancer patients and caregivers by encouraging them to learn to live again.

Mark Kelly

mark kelly

Young Adult Cancer Survivor

When Mark was 16 years old, he was diagnosed with rhabdomyosarcoma, a rare — usually terminal — pediatric cancer. The doctors put Mark on an experimental protocol that included massive chemotherapy, radiation, and a bone marrow transplant. Mark believes his strong faith in Jesus, his doctors, family, and mother helped him persevere. Mark attended Gordon College and was hired by ESPN as a researcher. During his 10-year career, Mark won two Emmy Awards for his work on SportsCenter, Cold Pizza, ESPNNEWS, College Basketball, and Major League Baseball. In 2008, Mark retired from ESPN due to the side effects of his cancer treatment. He was diagnosed with Crohn’s disease along with Lymphedema. Mark established CKMagicSports where he has produced and hosted over 130 podcasts. Read Mark’s memoir about his cancer journey: My Scars Tell A Story.

Tom Hulsey

tom hulsey

Prostate Cancer Survivor

Tom has gone from the shock of finding out he had cancer to the glory of beating it and showing others how goal-setting, commitment, and tenacity helped him beat this dreaded disease. After being diagnosed with cancer and achieving his post-surgery goals, he turned his focus to education and advocacy. He is a board member of ZERO The End of Prostate Cancer and a Consumer Reviewer for the DoD CDMRP Prostate Cancer Research Program. Tom volunteers at the Baylor, Scott & White Cancer Health & Wellness Center. Recently, he published a book that chronicles his journey The Winning Mindset That Saved My Life. Tom is donating 100-percent of the net proceeds to cancer research and education.

Dr. Laavanya Pasupuleti

Dr. Laavanya Pasupuleti

Multiple Myeloma Caregiver

Laavanya is an osteopathic physician with a wide range of experience in healthcare and a passion for patient advocacy and empowerment. She became a caregiver to her mother when she was diagnosed with multiple myeloma in 2001 and her recurrence in 2003. Along with her physician father, family, and friends, they supported her through the entire journey and today she is cancer free. Laavanya feels these experiences give her strong insight into what cancer survivors and caregivers must face in navigating the complex healthcare system. Laavanya graduated from the Philadelphia College of Osteopathic Medicine in 2008 after which she completed her osteopathic internship year in family medicine.

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dr. laura porter

Colon Cancer Survivor

In August 2003, during her second year of pediatric residency, Dr. Laura Porter was diagnosed with stage IV colon cancer. She had two recurrences first in 2004 and again in 2006. During this time, she became involved with patient advocacy. In 2005, Laura began attending online chats and found that her medical knowledge was an asset for those going through cancer treatment. She serves as an advocate, volunteer, and reviewer on over 10 committees including NCI Patient Advocate Steering Committee, ASCO National Quality Forum Palliative and End-of-Life Care Standing Committee, ASCO Targeted Agent and Profiling Utilization Registry (TAPUR) Study Molecular Tumor Board, DoD Peer Reviewed Cancer Research Program (PRCRP), and more. Everything Laura does is with the cancer patient in mind and what would be of benefit to them.

Sarah Schiltz

Sarah Schiltz

Liver Cancer Caregiver

For over 30 years, Sarah has been a healthcare business professional and ambassador for patients and care teams around the world. Her passion for the promise of “optimal healthcare for all” stems from the loss of family members early in life and her experience with cancer striking those closest to her. Her beloved sister is a breast cancer survivor and her husband was diagnosed with liver cancer in 2016. Sarah is a dedicated patient, family, and care team advocate who strives for a cure, well-being of our care teams, keeping hope alive and celebrating joys in life, every day.

T.J. Sharpe

t.j. sharpe

Melanoma Cancer Survivor

T.J. Sharpe is a Stage IV melanoma patient sharing his journey through cancer in his Patient #1 Blog. Diagnosed in 2012 with tumors in multiple organs, he has undergone six surgeries and four immunotherapies across two clinical trials. The initial failures, and subsequent response, have been chronicled in his posts. He is a keynote speaker and consultant to the biopharma and clinical research industries, working with major pharmaceutical corporations and as a patient advisor to TransCelerate to bring an educated patient voice as a true stakeholder in challenging healthcare’s status quo. A South Jersey native, T.J. lives in Fort Lauderdale, Florida, with his wife Jennifer and two young children Josie and Tommy.

Alicia Staley

alicia staley

Breast and Hodgkin’s Lymphoma Cancer Survivor

Alicia is a three-time cancer survivor, first diagnosed with Hodgkin’s disease as a sophomore during college. Alicia Staley is the Sr. Director Patient Engagement at Medidata. She has over 20 years of experience in software design and information systems and works to infuse the patient perspective throughout the product development lifecycle to engage patients in novel ways. For over 10 years, she’s applied her engineering background to improve the patient experience for those dealing with cancer. With a keen focus on improving access to clinical trials, Alicia is passionate about making a difference for patients searching for information about cancer.

Would you like to be a member of our Patient & Caregiver Advocate Board? If so, check out our Opportunities page!