Above and Beyond: A Celebration of Heroes of Glioblastoma

It was a night filled with inspiration, shared purpose and hope, as four heroes who have given selflessly in their efforts to improve the lives of people impacted by glioblastoma were honored at the 1st Annual Glioblastoma Multiforme (GBM) Heroes Awards. On hand to pay tribute to the honorees was actress and cancer survivor Valerie Harper, who encouraged her audience to “stay alive, stay fighting and continue on this amazing path of new ideas for treating and conquering cancer.”

“Cancer is a dual journey. It is medical and it is emotional, and it’s the advocates who have dedicated their lives to help others that we’re honoring today,” said Kathy LaTour, herself a two-time cancer survivor, who introduced each of the heroes at the awards ceremony held Nov. 20 in San Antonio, Texas, during the 20th Annual Scientific Meeting of the Society of Neuro-Oncology. The event was hosted by CURE Media Group, publishers of CURE magazine, and sponsored by Novocure.

“Each GBM hero is nominated by patients and caregivers for heroic contributions to the field of glioblastoma research or in the individual lives of people with glioblastoma,” said Michael J. Hennessy, Jr., president and CEO of CURE Media Group. “Their passion and indomitable spirit in making a difference in the lives of patients are an inspiration to us all.”

Harper, best known for her character Rhoda Morgenstern on the 1970s sitcoms "The Mary Tyler Moore Show" and "Rhoda," credits her medical team and new targeted therapies for her ability to first survive lung cancer, and then, for the last three years, to keep at bay the disease’s spread to the meninges surrounding her brain, a rare condition. She continues to advocate for cancer research funding and greater awareness of lung cancer risk, particularly for women, through her work with the advocacy group LUNGFORCE.

With many caregivers in the audience, she also paid tribute to her own caregiver, her husband of 30 years, Tony Cacciotti, who has supported her every step of the way.

The 2015 GBM Heroes, who were nominated by patients and caregivers, are:

Greg Cantwell

When Greg Cantwell was diagnosed with GBM at age 30, he didn’t know anyone who could relate to the fight he was about to undertake. In 2012 he founded Greg’s Mission, which provides support, hope, education and resources to patients suffering from brain tumors. Cantwell has dedicated his life to making sure that no person diagnosed with a brain tumor has to go through the experience alone and that no family member or caregiver goes without support. Greg’s Mission, based in Cedar Rapids, Iowa, has provided guidance and support to more than 1,700 patients, families and caregivers.

In presenting Cantwell with his award, Stacy Brooks called him “my personal angel, my hero.”

After her mother was diagnosed with GBM in 2010, she said, “I didn’t know where to go, where to turn … we weren’t getting answers we needed, we didn’t know the questions to ask … Greg has dedicated his life to helping people with GBM. He gives personal support to everyone who contacts him, be they a caregiver like myself or a patient fighting this terrible disease.”

Sherry Fox, PhD, RN, CNRN

Sherry Fox, the director of Quality of Life Programs and Services at the Cullather Brain Tumor Quality of Life Center in Richmond, Virginia, has also served on the board of directors of the Society of Neuro-Oncology and was the quality-of-life liaison to the Radiation Therapy Oncology Group Brain Committee. She is a recipient of the American Cancer Society’s Lane Adams Quality of Life Award and was recently inducted as a fellow of the American Academy of Nursing.

Cathy Willis, Cullather Center patient advocate, noted that “Sherry has dedicated her entire career to taking care of brain tumor patients and their families,” and that the Cullather Center has helped more than 1,000 families from across the United States.

“She had a big vision of what she wanted this center to become,” continued Baker. “One of the biggest needs she identified right off the bat was the caregivers. They were so overwhelmed and scared, and we were able to put CNAs (certified nursing assistants) into the home to help … and she has continued to add services for the whole family. The whole family is affected by this … and she made the center a place of refuge and strength for the families going through this brain tumor journey.”

Santosh Kesari, MD, PhD

Santosh Kesari, chair of the Department of Translational Neuro-Oncology and Neurotherapeutics at the John Wayne Cancer Institute and director of Neuro-Oncology at Providence Saint John’s Health Center in Santa Monica, California, is ranked among the top 1 percent of neuro-oncologists and neurologists in the U.S. Kesari has written more than 250 scientific publications, reviews and books. He is also founder and advisor to several biotech startups focused on cancer and neuroscience.

Jeffrey Donahue, a patient of Kesari’s, presented his award, noting that the doctor’s research “has been recognized throughout the world … By combining laboratory and clinical data, he is opening new avenues to therapies tailored toward individual patients.”

“On a personal front, his inspirational presence in my life helped me to press ahead with my GBM healing. In my deepest and darkest days of chemotherapy and radiation treatments, meeting with Dr. Kesari helped me to never give up … and with him, I understood that my healing was a partnership.”

Rick Sontag

Entrepreneur Rick Sontag takes a multifaceted approach in his work toward improving the lives of patients with GBM and other brain tumors. He engages and supports the brightest scientific minds in brain cancer research through Sontag Foundation grants, has convened the only brain tumor support group in northeast Florida, and created the Brain Tumor Network, which provides treatment-related information services to brain tumor patients throughout the U.S.

Raymond Jenkins, a caregiver helped by the brain tumor support group, paid tribute to Rick Sontag: “Over 21 years ago, Susan Sontag was diagnosed with an inoperable brain tumor, and her husband Rick, a successful businessman, recognized the void for patients and caregivers with brain tumors; in 2000, he founded the Sontag Foundation.”

Jenkins added that one of the key parts of the foundation is the brain tumor support group, which has become “a guiding light through the maze of the health care system and support services needed by brain tumor patients and their families.”

“The support group shares a special bond. We are all in the same fight … this group teaches us that it’s OK to move forward and not live MRI to MRI, but enjoy each day and each moment.”

In closing, Laura Benson, vice president of medical affairs at Novocure, noted how the first GBM Heroes awards honored many different people, exemplifying “how it’s not just one single person or entity, but a team effort.”

“And behind that team effort, there are a number of ‘firsts.’ There’s always a patient who has been the first to take a new drug or therapy and be brave enough to try something ‘out of the box’ … this is the first of many celebrations we will have to move the mark forward on cancer care.”