The Healing NET Foundation advocates for the right team, the right treatment, at the right time. So, what does that mean? To explain, I’d like to tell you a bit about how this organization started, and then where we are headed in 2015.
If you have ever had the experience of being in the right place at the right time, or the unfortunate experience of the opposite, then you can appreciate how fate and circumstances brought together the team that created The Healing NET Foundation.
Being newly diagnosed with pancreatic neuroendocrine tumors, recovering from surgery, and having no answers to my many questions about this strange cancer, I was determined something needed to change in the medical community’s perception and treatment of this disease. My journey took me to see Dr. Eric Liu - not only did he feel the same way, but he also had the expertise and vision to know how to change it. We were introduced to a young woman recently crowned Miss Tennessee who was looking for a cause to get behind, and a big incentive to fight neuroendocrine cancer because a former teacher of hers had been diagnosed. Colleagues in the business and non-profit community stepped forward offering support.
Together we looked at what was already being done in the United States. Organizations like Carcinoid Cancer Awareness Network, (now known as the Neuroendocrine Cancer Awareness Network) had set some major precedents in offering support and education to patients. NANETS had been established as a place for established physicians to share and connect with the latest research and treatments. An obvious problem was the big void between physicians and patients connecting. A HUGE VOID. Physicians who had a ZEBRA in their care didn't necessarily have access to the right information.
For the last several months, Dr. Liu has been putting together some big plans to reshape the neuroendocrine landscape. With respect to physicians, the good news is that there are some dedicated, experienced, and passionate neuroendocrine specialists out there who want to help. The bad news is that there are only some, and not every patient has immediate access. The Healing NET Foundation has goals set for 2015 that involve educating more community doctors to recognize and understand NET care, and being willing to learn more. Under Dr. Liu’s leadership, we are bringing together a team of NET specialists who will look at how NET care is held accountable in Europe, and how some of those standards can be used to establish and incentivize better care in the United States. We are also looking at supporting virtual ways to bring teams of doctors together to confer on more complex cases.
We are expanding our board, and bringing together experts in the scientific, business, education, marketing, and medical fields to help us reach goals, and effect change immediately. Nutrition is a very important issue, and we are combining forces with an organization already providing organic and non-GMO meals to cancer patients trying to make healthy choices while going through treatments. NET patients especially need help in this area.
It is not easy to move mountains, and it takes a team, just like it takes a team to effectively fight neuroendocrine cancer. As any NET patient knows, it can be hard fight. However, the rewards are fantastic; whether it’s the ability to enjoy another meal in a favorite restaurant or a trip with a loved one, get relief from weird symptoms and just feel normal, or know you get to celebrate another birthday. NET patients deserve the right team, and we have been called to help make that happen.
Cindy Lovelace, NET Survivor and President/Executive Director, The Healing NET Foundation