There was a time when Grace Goldstein didn’t know much about neuroendocrine tumors (NET). This didn’t discourage her from responding to a job post for a part-time position at The Carcinoid Cancer Foundation (CCF). That was 12 years ago.
Grace got the job and, on the strength of her insatiable desire to learn and interest in personal health, became the CCF’s Chief Operating Officer. Along the way, she’s helped change both the foundation and the lives of countless people affected by neuroendocrine cancer.
It took commitment, dedication, and hard work – qualities that Grace carries with her each day and that have earned her recognition as the 2014 Monica Warner Award recipient.
“I love doing research,” she says. “The more difficult the problem or question, the more motivated I am to find the answer.”
Good thing, too, because Grace gets a lot of questions. She personally responds to thousands of e-mails each year, and speaks with patients and other concerned parties on the phone every day. The information and guidance she provides as a patient advocate are personalized to each person’s situation or needs.
“After we speak on the phone, I’ll follow up by e-mail with 10 to 15 specific suggestions for that person,” she says. “The best thing I can do is to give them information to help them handle their situation in a more empowered way, because when people are knowledgeable, they’re more comfortable.“
“I say to them, turn on your computer and let’s get started!” she says.
Computers – specifically the Internet and social media – have changed the landscape dramatically for people affected by NET. It’s driving a “huge surge of sharing,” says Grace, who has a professional certification in social media. “There’s more awareness and research happening, and more opportunities for people to participate in advocacy and learn from one another.”
“The ability to stay connected creates a stronger sense of community. People can learn from each other, get their questions answered, and share their experiences,” Grace says.
Social media is a key part of the CCF digital vision, which includes leveraging not only social media outlets like Facebook and Twitter, but a redesigned website, as well (www.carcinoid.org). The site includes a link to an online discussion forum for community physicians to talk with NET specialists about issues or questions they may have. Grace continues to play a key role in all of these endeavors.
Grace’s penchant for research and talking with doctors and researchers has also helped her develop a series of video interviews. These videos are part of CCF's YouTube channel, which has received more than 80,000 “views” over the past 4 years.
For one project, Grace interviewed physicians and patients involved in a National Institutes of Health (NIH) clinical study on NET. The resulting story raised awareness of Gallium-68 scanning and other NET tests, and may have even helped boost enrollment in the study.
In addition to CCF, Grace was involved with the formation of the International Neuroendocrine Cancer Alliance (INCA) and is a former president of the group. INCA is a global network of advocacy groups whose many activities include annually sponsoring Worldwide NET Cancer Awareness Day (WNCAD).
“INCA affords advocacy groups all over the world a more global perspective,” she says. “We can get country-specific answers. It’s a great way for us to learn from one another.”
“Awareness and education are still key,” Grace says. “The NET vocabulary should be words that people hear and know everywhere.”
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Novartis Oncology and Patient Advocacy provide support to patients through an array of programs and services.
The NET Alliance is a Novartis Oncology initiative working to help improve outcomes for patients with NET.