NETCONNECT Mentors
NETCONNECT is a buddy system to connect NET patients and caregivers with those who can truly relate, listen, provide support and resources.
We were all once the newly diagnosed, or the loved one of someone newly diagnosed, and understand what that feels like. Our mentors know how important it is to connect with others who “speak NET,” are familiar with NET terms, medical experts and treatment options. Or just to be reminded to take a deep breath and know you're not alone in this journey.
CONNECT WITH A MENTOR
Whether you are newly-diagnosed or a long-term survivor, our mentors are here for you. Please send us an email to be connected with a mentor.
MEET THE NETCONNECT MENTORS
BRENT CURRIE
NET Patient
Brent was diagnosed mid-2017 during an ER visit for blockage and had his large midgut primary NET near the ileum resected. His local oncologist closely monitors bloodwork and scans for new metastases and coordinates results with his multidisciplinary NET center and NET specialist.
His past treatments include a second major resection, and lanreotide which he worked hard with his medical team to minimize the severe side-effects unique to him. He is happy to be working with newly diagnosed patients, helping folks understand the terminology and preparing for specialist visits using the NET Vitals worksheet. He is finding this stage of life to be a faith journey just as much as it is a medical journey. He is also a caregiver to his cancer-survivor mom, and enjoys technology and singing/playing music.
Watch Brent share about his NET journey here.
HEATHER DAVIS
LACNETS Associate Director
of Advocacy & Outreach
Heather was a medical advocate and caregiver for 12 years for her mother, Shaunie, who was diagnosed with pancreatic neuroendocrine cancer in 2012. The efforts required to navigate and manage a rare disease, with complications of Zollinger-Ellison Syndrome, motivated Heather to shift her 20-year marketing career to patient engagement. After learning from and volunteering for LACNETS, she was pleased to join the LACNETS Team in the Fall of 2022.
Heather is passionate about supporting those affected by NET. She aspires to bridge the information gap between patients, physicians and healthcare resources. Spending time with her nephews, friends & family brings her levity and joy.
Watch Heather and her mother share about their experience with PRRT.
BETH DEBLASE
NET Patient
Beth was diagnosed in 2016 with metastatic, midgut NET. In that time, she has made aesthetic oncology and integrative therapies her passion. Her mission is to help enhance the quality of life for fellow cancer patients and caregivers, including herself, her four children, and husband.
Watch Beth share her inspiring story of strength and resilience titled, “A Shared Experience” here.
MICHEL DEQUEVEDO
NET Patient
Michel DeQuevedo is a Mexican – Canadian musician living with NETs. After almost 10 years of being “diagnosed” with pretty much every single gastrointestinal condition, changing his diet almost as often as his socks, constantly visiting everybody’s bathrooms and taking tons and tons of non-recreational drugs, he was diagnosed with functional, grade 1, Gastrointestinal NETs, small bowel primary with mets in his liver, appendix, right lung and omentum in September 2021.
Michel had an open surgery in December 2021 where some of his factory original parts where removed, along with 90% of the tumors. He is currently on Lanreotide, 120mg every 21 days and can finally have a conversation with someone without having to take bathroom breaks!
Michel is an active patient advocate and the founder of NETs México, working to raise awareness about NETs in México and Latin America. He believes keeping a positive attitude is extremely important, as it helps us maintain a clear mind and keeps us moving forward.
Watch Michel’s story of diagnosis to patient advocacy here. This video is also available in Spanish, found here.
MARY DONLEVY
NET Patient & LACNETS Board Member
Mary was diagnosed in 2005 with a Pancreatic NET. She had a Whipple surgery after her initial diagnosis and a decade of stable disease afterwards on Afinitor and Sandostatin treatments. After a liver resection surgery in 2023 Mary is currently managing her liver metastases with Lanreotide.
While living well with this disease for nearly 20 years Mary has raised four children, two of which are identical twins born after her diagnosis. Mary enjoys ocean swimming and traveling with her family.
Watch Mary share about her experience in a clinical trial.
Watch Mary share her story of living with pancreatic neuroendocrine tumor.
DENNY ORGAN
NET Patient
Denny likes to say that he is living quite well with well-differentiated grade 3 NETs first diagnosed in June of 2020, with significant mets in his liver. Early in his NET journey he dedicated the time to gain as much understanding and knowledge as possible about his disease, treatment options and prognosis.
His path has been somewhat unique in having his first-line treatment be
Lu-177 PRRT in 2020, and following progression in 2024, two additional rounds of Lu-177.
Denny is a very engaged self-advocate and has assembled a strong cross-functional medical team of NET specialists for support. He is a strong believer in integrative oncology being a partner with traditional oncology on his cancer journey and continues to learn and implement strategies for whole body health. Denny’s goal is to keep his cancer, carcinoid heart disease, coronary heart disease and gallstones stable so that he can enjoy the best possible quality of life. He continues to have the time and energy to enjoy a wide variety of hobbies, keep physically active, connect with other NET patients throughout the west coast, and even occasionally provide a patient perspective at
NET medical conferences!
SHANE PETERS
NET Caregiver & Advocate
Shane dove headfirst into the world of neuroendocrine tumors after his mother was diagnosed with stage four, pancreatic NET in 2020. Shane's mom, Ilka, is his best friend and he is determined to do everything and anything possible to make sure his mom forever receives the best cancer care.
Shane's mother has undergone a distal pancreatectomy, splenectomy, cholecystectomy, five bland liver embolizations, countless Lanretoide injections and a second liver debulking surgery at the NIH to manage her diagnosis
Shane has found such a loving community within LACNETS, in which many of these connections have become dear friends and supporters in his life. Shane is so grateful to be able to give back to the community and help those facing similar journeys as his mother. When Shane is not learning about NETs, he spends his days teaching chorus, piano and music in southern New York!
Watch Shane and his mother share their NET journey.
Read Shane Peters' blog post 'Scan Results: To Check or Not to Check'
AIMEE POWELL
NET Caregiver & Advocate
Aimee Powell's involvement with the NET cancer community has its roots in her work as a caregiver for family members diagnosed with pheochromocytoma and paraganglioma (pheo/para). She has worked in an administrative capacity with nonprofits since 2005, and as a professional communicator for over twenty-five years. After her brother's death from malignant paraganglioma, she dedicated herself to raising awareness of para/pheo, and to assisting patients with these rare tumors. Aimee is the founder of the Pheo Para Project, past Executive Director of the Pheo Para Alliance, and currently sits on the board of directors for the SDH-Deficient Cancer Research Advocates. She lives in the Greater Los Angeles area.
SAMUEL PRENTICE JR.
NET Patient
Samuel is 78, widowed with three children, a retired professional social worker, holistic counselor and educator. He was officially diagnosed in 2017 with NET originating in the small bowel with liver metastases, resulting in the removal of nine feet of small intestine, ileum, iliosacral valve, and his appendix.
Samuel then began monthly Sandostatin injections, but in 2018 had a NET colon blockage which led to a colostomy and multiple hospitalizations. In January, 2019 he completed four cycles of PRRT resulting in five years without NET growth. In 2023, he had ⅓ of his neuroendocrine tumorous colon and colostomy removed. The surgeries, however, resulted in struggles with gastrointestinal motility and weight loss.
Regardless, Samuel maintains quality of life and energy by swimming and QiGong exercise, singing, dancing, traveling between homes in Southern California and the Indiana Dunes to visit family and friends, continuing his personal holistic growth, progressive political activism and doing one-on-one volunteer counseling with NET patients. He also has fun driving his Acura NSX, and attending hockey, theatre, music, fine art live events and
handing out Lollipops!
VALERIE TIPPY
NET Patient
Val was diagnosed with Carcinoid Syndrome in October 2015 with an unknown primary. Along with the unpredictable diarrhea and fatigue, she also deals with sudden shortness of breath, coughing and a hoarse voice. Val’s doctors feel her NET is hiding, so routine tests and scans are done to try and locate the elusive tumor. This can be an ongoing challenge for some NET patients, so getting to the right NET specialist is crucial. In early 2016, Val began doing Lanreotide shots every 4 weeks. When that did not seem to control the symptoms, she was given Lanreotide every 3 weeks, with 5 – 8 rescue shots per day, as needed. In November 2021, her doctor decided to try using an insulin pump with hourly infusions of Octreotide. It was quite a process to find the right dosage, but it has helped tremendously with controlling the syndrome.
Val recently retired after spending the last 20 years working with hospitals on designing security systems for patient protection. Her goal is to travel with her husband and spend time with her two adult children.
BETH VOYLES
NET Caregiver
Beth is the primary advocate and caregiver for her husband Don. Don started on this roller coaster ride when he was diagnosed in November 2019 with midgut NETS with metastases to his liver, pancreas, and bones. He also experiences carcinoid syndrome. He has undergone numerous treatments for his NETS as well as replacement of both his tricuspid and pulmonary heart valves. His symptoms have been very difficult to control.
Beth’s professional career as a palliative care nurse provides a unique perspective on the role of advocacy and caregiver.
Beth and Don have experienced both highs and lows on this journey, but they continue to take it one day at a time. Traveling when they can and making memories with family and friends along the way.
Watch Beth and Don share about their NET journey here.