Victoria Reggie Kennedy Shares Her Brain Tumor Journey with Patients and Families

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August 1, 2011

CHICAGO, IL ― Victoria Reggie Kennedy gave an emotional and inspiring recap of the 15-month journey that she and her husband, U.S. Senator Edward M. Kennedy, shared as they battled and braved a brain tumor diagnosis together. Mrs. Kennedy spoke at the American Brain Tumor Association Annual Meeting Dinner, “Strength through Change and Challenge,” July 29, 2011, in Lincolnshire, IL.


“From the day my husband was diagnosed with a brain tumor, it wasn’t just his disease, it was our disease. I thought of it and referred to it as our tumor,” said Kennedy. She described the next 15 months as “a story of hope and happiness – of love and laughter – and of outstanding medicine and optimism."


“It is no exaggeration to say that being with my husband during the last 15 months of his life was the greatest gift I have ever received in my life,” said Kennedy. “Don’t get me wrong – I would not choose the diagnosis of a glioblastoma. But once the hand was dealt, I would choose to live exactly the kind of life that Teddy and I lived.”


She highlighted months of treatment and care, but mostly, wonderful moments and opportunities: birthday parties, sailing, a new puppy, the Senator’s historic vote to save Medicare, President Barack Obama’s inauguration, and the love of family and friends.


“All of us here today in this room are part of a very special club,” said Kennedy. It’s not a club that we would have chosen, but brain tumors have impacted our lives in powerful ways. However we are touched by brain tumors, we are not alone. That is what ABTA shows us; that is what ABTA does for us.” "The American Brain Tumor Association mission is compelling all of us to move forward,” said Kennedy. “I am so proud to be here today; so proud to be part of your extended family.”


Kennedy’s remarks followed the Jonathan Gingras presentation of the Joel A. Gingras, Jr. Award to Ryan and Gina Porter. The Porters have hosted the "Train for the Brain" event for the last 14 years, in memory of their son, Justin, who died at age 6 from a brain tumor. The Joel A. Gingras, Jr. Award is named in honor and memory of a beloved brother and son. Joel’s family and friends have hosted events for more than 20 years, raising more than $1 million for brain tumor research and patient-family education and support.


Also Friday night, Jan Buckner, MD, of Mayo Clinic, announced a new partnership between the American Brain Tumor Association and Mayo Clinic to provide a patient navigator and enhanced patient information to patients and families at the Rochester, MN institution.


The American Brain Tumor Association Annual Meeting Dinner punctuated the 2011 Patient-Family Connections Meeting & Retreat, July 29-30. The meeting brought brain tumor experts, individuals living with a brain tumor diagnosis and their families from throughout the United States to the Lincolnshire Marriott in Lincolnshire, IL. The extraordinary two-day event included sessions on the latest brain tumor quality of life strategies, research findings and treatment trends. In addition, the resort setting provided the perfect venue to relax, restore and connect with others sharing a similar diagnosis.


Highlights:

  • Susan Chang, MD, director of neuro-oncology at the University of California, San Francisco, presented her research on unmet patient and caregiver needs.
  • Jeffrey Bruce, MD, Columbia University Medical Center, and Anita Mahajan, MD, of MD Anderson Proton Therapy Center, highlighted new treatment trends.
  • Derek R. Johnson, MD, Mayo Clinic, provided an introduction to clinical trials.
  • Jeffrey Cozzens, MD, Southern Illinois University, provided a "Brain Tumors 101" overview.
  • A Mock Tumor Board featuring brain tumor specialists from Cleveland Clinic, MD Anderson Cancer Center, the University of Chicago, the University of California San Francisco, and the University of Kentucky reviewed actual brain tumor cases and answered questions.
  • ABTA 2010-2011 Fellows presented their research findings and answered questions from patients and families.
  • Tumor-specific treatment workshops featured brain tumor experts from Mayo Clinic, MD Anderson Cancer Center, Columbia University Medical Center, NorthShore University HealthSystem and Childrens Memorial Hospital.
  • Quality of Life Workshops on neuropsychology, educating your child's teachers and schools about a brain tumor, caregiver stress management, adolescents and young adults, oncofertility, advance care planning and financial resources, benign brain tumors, and patient and parent support groups


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ABOUT THE AMERICAN BRAIN TUMOR ASSOCIATION
Headquartered in Chicago, the American Brain Tumor Association was the first national organization committed to funding brain tumor research and providing compassionate outreach to patients and caregivers coping with a brain tumor diagnosis. For nearly 40 years, the association has funded researchers working toward breakthroughs in brain tumor diagnosis and treatment. Through its dedicated team of licensed healthcare professionals, the ABTA provides brain tumor information and education for patients, families and healthcare professionals. The American Brain Tumor Association is a federally registered 501(c)3 charity that consistently earns high marks from the nation’s charity ranking organizations. For more information, visit www.abta.org.