Trinity Lowthian is a Canadian Paralympian and home TPN patient. As an athlete, Trinity is a nine-time Pan-American medalist in wheelchair fencing. At the 2024 Summer Paralympics, she delivered Canada's best-ever wheelchair fencing result, placing fifth in women's épée B. Academically, she studied her Honours Bachelor in Food and Nutrition Sciences at the University of Ottawa and has a passion for clinical nutrition. Trinity has also been involved in research and patient engagement since 2019. Starting as a member of the Youth Advisory Committee for The Canadian Collaborative for Childhood Cannabinoid Therapeutics (C4T) she has continued to work on projects in patient engagement with organizations including the Canadian Institutes of Health Research, the Canadian Nutrition Society, and Health Data Research Network Canada with a focus on improving research outcomes that matter to patients. Her lived experience motivates her to improve patient quality of life outcomes through clinical practice and research.

Tripp Hays joined the team at Explore Charleston in 2022 as a Destination Service Manager.  In this capacity he works with groups to arrange activities and events outside of their host hotel.  Prior to joining Explore Charleston Tripp has spent 35 years in the hospitality industry with time at the Francis Marion Hotel, InterContinental Hotels Group, and The Mills House Hotel.  His responsibilities have included General Manager, Director of Sales and Marketing, Rooms Division Manager and Portfolio Revenue Manager.  He holds a Bachelor of Science in Business Administration from the College of Charleston and served in the US Army as an Intelligence Analyst.  Tripp is a former President of the Charleston Hotel Association and Chair of Charleston Travel Council.  He has served faculty at The Culinary Institute of Charleston and on Charleston School District Career and Technology Steering Committee as well as Industry Advisor for Garrett Academy of Technology.

Andrea Taylor, RD, CNSC, brings over 17 years of expertise in nutrition support, with more than seven years in inpatient settings and over nine years in home nutrition support, to her current role as Manager of National Advocacy with the Oley Foundation. She applies her extensive experience to enhance patient-centered care and is passionate about integrating the patient perspective into both clinical practice and clinician education, ensuring a more empathetic and effective approach to nutrition support. Balancing her full-time passion on a part-time schedule, Andrea enjoys spending quality time with her husband and two children.

Dr. Mercer is Professor of Surgery and Director of the Intestinal Rehabilitation Program at the University of Nebraska Medical Center. Originally from Edmonton, Canada, he came to Nebraska to be trained as a liver and intestine transplant surgeon. He developed a love for intestinal rehabilitation during his training, and it has become the main focus of his clinical career. He heads a specialized program that looks after hundreds of children and adults from across the country who are dealing with complex intestinal problems including short bowel syndrome, functional disorders of the small and large intestine and enterocutaneous fistulas. His team of dietitians, nurses, social workers and gastroenterologists provides comprehensive nutritional, medical and surgical management of patients ranging from simple TPN and tube feed management to the most difficult nutritional scenarios. He is involved in all major clinical trials in the field, and lectures on the role of intestinal rehabilitation programs in getting people off of TPN, surgical strategies in short bowel syndrome/complex intestinal problems, patient-driven research in quality of life, and all aspects of intestinal transplantation.

Vanessa is a nutrition support pharmacy specialist at the Center for Human Nutrition at Vanderbilt University Medical Center, Nashville, TN, Vanessa Kumpf’s practice is focused on the outpatient management of adult patients with intestinal failure.  Her nutrition support experience includes hospital, home infusion, and outpatient settings.  She has served in several leadership positions within ASPEN and currently serves on the Board of Directors of the Oley Foundation. Her interests include safe use of PN, minimizing complications, and improving quality of life for home PN patients.

Marie Neumann is a social scientist and has conducted research on pediatric palliative care, the parenting of children with medical complexities, and, most recently, how short bowel syndrome or intestinal failure impacts the wellbeing of patients and families. She is currently earning a Ph.D. and holds a research position at the University of Nebraska Medical Center (UNMC) in Omaha, NE, where she studies quality of life for children and families impacted by SBS/IF. Marie's personal SBS journey inspired this work. Six years ago, her youngest child was diagnosed with ultra-short bowel syndrome. Clinicians' communication at the time about what her son’s future would look like propelled her to systematically study the experiences of children with IF and their families. Together with a group of SBS community members, Marie founded the gutsy perspective, an initiative intent on closing the gap between the SBS community and the research that affects its members.

Kalee is a clinical dietitian and certified health educator with diverse experience in healthcare, public health education, patient advocacy, and medical nutrition therapy. Her journey began as an individual reliant upon nutrition support herself, which inspired her career in clinical nutrition. Her career focus has been on the process improvement and management of nutrition support therapies in the hospital, ambulatory and home settings and during transitions of care. Currently, Kalee serves as the Education Manager for the Oley Foundation where she develops, coordinates and oversees the educational programs and initiatives of the foundation. She strives to make a meaningful impact on the quality of life, care ownership, and patient care experience of individuals on home nutrition support.

Luccas feels incredibly fortunate to be alive after a near-death skiing accident in December, 2020. Due to a ruptured SMA, he lost all but six inches of his small intestine, with his duodenum connected to colon. He survived after his heart stopped for ten minutes, and he received over 150 units of blood. Luccas was in a coma for a week and had a spinal fusion for a fracture at L2. He has since relied on daily home parenteral nutrition (HPN) and is on the Board of Directors of the Oley Foundation.  Luccas is the co-founder and President/COO of a Private Equity firm in Dallas, Union Industrial Co. He graduated in three years with advanced standing with a B.A. in Economics from Harvard, magna cum laude, and received his MBA at the University of Chicago Booth School of Business.

Tonya Henry is a patient advocate with multiple rare diseases. She is also a disabled veteran with prior Army experience. After leaving the military,  she went on to get an AAS as a Medical Lab Technician. Then, a BS in Healthcare Admin. Her illnesses prevented her from gainful employment.  She was tube fed for 2 years before relying on HPN since 2019. Tonya has a heart for serving in any way possible, so she starting advocating.

Vincent was diagnosed with CIPO at age 4 and has been a patient ever since. He received his first feeding tube and central line at 6 and now, at 33, relies on both, receiving PN nightly. A former volunteer at the Oley Foundation, he is passionate about helping others with similar conditions. Despite his illness, he competes as a bodybuilder, winning multiple competitions and earning international invitations. Fitness has greatly improved his health, making the gym a key part of his life. He lives with his girlfriend, Gabriella, and their dog, Adida, and is excited to use his experiences to make a difference.

Marie Neumann is a social scientist and has conducted research on pediatric palliative care, the parenting of children with medical complexities, and, most recently, how short bowel syndrome or intestinal failure impacts the wellbeing of patients and families. She is currently earning a Ph.D. and holds a research position at the University of Nebraska Medical Center (UNMC) in Omaha, NE, where she studies quality of life for children and families impacted by SBS/IF. Marie's personal SBS journey inspired this work. Six years ago, her youngest child was diagnosed with ultra-short bowel syndrome. Clinicians' communication at the time about what her son’s future would look like propelled her to systematically study the experiences of children with IF and their families. Together with a group of SBS community members, Marie founded the gutsy perspective, an initiative intent on closing the gap between the SBS community and the research that affects its members.

Meghan Rauen MA/MA LCMHC/NCC holds two graduate degrees from Wake Forest University, in Bioethics and Clinical Mental Health. Meghan is also a certified bereavement doula through Stillbirthday, a certified hospice companion from Reiki Awakening Academy and has prior worked in Special Needs education. Her research and training center around bioethics, palliative care and mental health with complex and terminal pediatric patients, families and clinicians. Meghan wears several hats; she works in a volunteer capacity as the Director/CEO of The Global Gastroschisis Foundation/Avery’s Angels. Meghan is also a Licensed Clinical Mental Health Counselor in NC and a National Certified Counselor who specializes in families and children with chronic and terminal illness, trauma and grief/bereavement. Meghan lives in Wake Forest, NC, with her two surviving children who are in a bazillion activities, her husband who is also in a bazillion things, 2 dogs, 3 birds and a chameleon who have no activities.

Swapna is an advocate, speaker, consultant, and researcher in rare and chronic disease healthcare delivery and patient experience. Through her platform, Swapna Speaks, Swapna has spoken across the world to various companies and associations and has given a TEDx talk. Swapna also does health care advocacy, research, and policy work for the intestinal failure, vascular access, and broader rare disease communities in her home state of Alabama and nationally. In 2017, she founded Alabama Rare, an organization advancing healthcare policy and education for Alabama’s rare disease community. In 2021, she, alongside parent researchers/advocates, co-founded the gutsy perspective, a research initiative driven by members of the short bowel syndrome community to ensure the patient and family narrative is represented in research and patient-centered outcomes. Swapna was born with short bowel syndrome and received a small intestine transplant 10 years ago. Swapna resides in Huntsville, AL, the acclaimed rocket city.

Jessica Allen is from Birmingham, AL and an Associate Professor of Psychology at Athens State University. Jessica is a gerontologist with expertise in prognostication, advance-care planning, psychosocial wellbeing, and quality-of-life outcomes for individuals living with and caring for chronic disease across the lifespan. Jessica received her PhD in Aging Studies from the University of South Florida. She completed postdoctoral training at the Institute for Health, Health Care Policy & Aging Research at Rutgers University. In May 2024, she was awarded the Outstanding Educator of the Year award at Birmingham-Southern College. Jessica is a former Pediatric Pulmonary Center and LEND family leader trainee at the University of Alabama-Birmingham.

Cara Larimer, RD, CNSC is the Director of Clinical Development for the Enteral product line at Moog. Cara attended the University of Arkansas and completed her dietetic internship at Barnes Jewish College of Nursing and Allied Health. After working a variety of hospitals across the country, she was seeking a new adventure landing her into the world of home enteral nutrition support. She has since spent over 14 years developing her passion for enteral nutrition support, while helping to champion those patients live their best lives.

LumaCleanCares, LLC is led by its two Founders/Partners: a medical engineer and a registered dietitian. Among them is Martin von Dyck, a principal partner with a legacy of groundbreaking medical innovations. As the former President of Biosearch Medical Products, Inc., Martin became globally recognized as the “Enteral Innovator” and co-inventor of the Dobbhoff® naso-gastric feeding tube. In the early 2000s, he shifted focus to cardiovascular, neurovascular, and urology catheter technologies, later developing a swallowable catheter for early esophageal cancer detection. In 2023, after co-inventing the EnClean® brush, designed to effectively clean ENFit® connectors, Martin attended the Oley conference. There, he met patients and caregivers whose stories deeply resonated with him—reinforcing his mission to drive change. "It was an awakening for me to encounter so many patients who had many unaddressed needs. We want to focus on the pain points, both for the medical practitioners and the patient."

Janelle Stier has been a Registered Dietitian since 1999. She has worked in medical sales for the past 20 years.

Janel graduated from the University of Wisconsin – Milwaukee with her bachelor’s of science in nursing. She comes with 25 years of pediatric experience at Children’s Wisconsin. She was a float nurse for nearly fifteen years and developed a strong background in many clinical areas. Throughout her career at Children’s Wisconsin, she helped develop the Enteral Feeding Program providing expertise and individualized care of children with feeding tubes. She is passionate about educating on feeding tube care. Janel knows that building strong relationships with the families is essential, and she is happy when seeing patients adapt to their feeding tube and thrive. Coordinating care is important to help better prepare patients for when they go home. She joined Avanos as a Clinical Educational Specialist in January of 2024.  Janel has been involved in several quality improvement projects throughout her career and has presented at various conferences throughout the U.S.

Ben has served as the Executive Director of the Global Engineered Device Supplier Association (commonly known as “GEDSA”) for the last 3 years but has been involved with the organization since 2012, serving on various committees and on the Board of Directors.  Prior to GEDSA, Ben was a VP of Engineering and Product Development in the medical device industry.  He is a subject matter expert on enteral/oral syringes, dosing accuracy, nasogastric feeding tubes, enteral connectors, and enteral medication/pharmacy accessories.  Ben is an inventor on over 75 patents and holds a BS in Industrial Engineering from the Georgia Institute of Technology.  Ben is very passionate about advancing patient safety, improving patient outcomes, enhancing the user experience, and the innovations that support these passions.

Dr. Claude Spears has over 35 plus years in the healthcare field. He is currently employed as a medical science liaison by Alcresta Therapeutics. Prior to this, he spent time as a healthcare practitioner with multiple hospitals and accountable care organizations to include Privia Health Group, Loudoun Medical Group, The NP Group, Eden Healthcare, and The George Washington University Hospital.

Dr. Spears received his doctorate from Capella University, and both his Bachelors and Masters degrees from Chamberlain University. He also holds a Bachelors from Washington and Jefferson College. He resides in Northern Virginia and his wife and daughter.

Kelley Napier is a partner at Georgia Estate & Elder Law in Atlanta. Kelley holds the Certified Elder Law Attorney (CELA) designation from the National Elder Law Foundation (NELF), the only organization approved by the American Bar Association to offer certification in elder law. She is a member of the National Academy of Elder Law Attorneys. She attended Law School at Georgia State University. She is a mother to four children including one on enteral feeds.

Dejan Micic, MD, is an Associate Professor of Medicine and Associate Chief of the Division of Gastroenterology at Loyola University Medical Center. His clinical expertise includes the management of inflammatory bowel disease (IBD), adult clinical nutrition and small bowel disorders. After completing a clinical fellowship in gastroenterology at the University of Chicago, Dr. Micic underwent advanced training at Northwestern University, specializing in nutrition support. Dr. Micic’s clinical practice encompasses the management of IBD, celiac disease, intestinal failure, and small bowel bleeding. His research interests focus on the impact of diet on IBD, the role of parenteral nutrition in liver disease development, and the longitudinal care of patients with intestinal failure and small bowel bleeding.

Bethany is a self-described professional patient. She currently manages her complex medical team, integrating her home care and daily medical needs. As a patient advocate, she volunteers with advocacy groups to help bring awareness to legislators for patients living with rare disease. She also has served on research steering committees providing patient perspectives. Her full-time job is as an Architect and Program Manager. She has been an integral part of award-winning design teams across the country and around the world. Bethany is also a Founding Board Member of the 501(c)3 now known as Intestinal Rehab and Transplant Unwrapped where she helps bring the mission to life to ensure every patient, caregiver, and member of the intestinal disease community feels well-educated and supported throughout their journey with intestinal failure, intestinal rehabilitation, and intestinal and multivisceral transplantation. In her spare time she is an avid hiker, biker and loves to read.

Dr. Sivan Kinberg is a board-certified pediatric gastroenterologist and clinical informatician specializing in short bowel syndrome (SBS) and intestinal failure (IF). She is the Founder and Director of the Pediatric Intestinal Rehabilitation Center at Columbia University Medical Center, where she leads a multidisciplinary team caring for children and young adults with SBS and IF. Dr. Kinberg is nationally recognized for her work optimizing transition of care for adolescents and young adults with these conditions. She also serves as Program Director for Columbia’s Clinical Informatics Fellowship and holds a joint appointment in Clinical Informatics. Committed to advancing care through research, education, advocacy and innovation, Dr. Kinberg develops evidence-based protocols and promotes interdisciplinary collaboration. Her work has significantly improved outcomes for patients and provided a model for integrated, lifelong care in pediatric intestinal rehabilitation.

Dr. Mercer is Professor of Surgery and Director of the Intestinal Rehabilitation Program at the University of Nebraska Medical Center. Originally from Edmonton, Canada, he came to Nebraska to be trained as a liver and intestine transplant surgeon. He developed a love for intestinal rehabilitation during his training, and it has become the main focus of his clinical career. He heads a specialized program that looks after hundreds of children and adults from across the country who are dealing with complex intestinal problems including short bowel syndrome, functional disorders of the small and large intestine and enterocutaneous fistulas. His team of dietitians, nurses, social workers and gastroenterologists provides comprehensive nutritional, medical and surgical management of patients ranging from simple TPN and tube feed management to the most difficult nutritional scenarios. He is involved in all major clinical trials in the field, and lectures on the role of intestinal rehabilitation programs in getting people off of TPN, surgical strategies in short bowel syndrome/complex intestinal problems, patient-driven research in quality of life, and all aspects of intestinal transplantation.

Associate Professor of Surgery   Chief Intestinal and Multivisceral Transplant - University of Pittsburgh  Director, Gastrointestinal Rehabilitation and Transplant Center - GIRTC   Staff Surgeon Liver and Small Bowel Transplantation, Starzl Transplantation Institute (STI)   Department of Surgery, University of Pittsburgh Medical Center, Pittsburgh, PA, USA.

Swapna is an advocate, speaker, consultant, and researcher in rare and chronic disease healthcare delivery and patient experience. Through her platform, Swapna Speaks, Swapna has spoken across the world to various companies and associations and has given a TEDx talk. Swapna also does health care advocacy, research, and policy work for the intestinal failure, vascular access, and broader rare disease communities in her home state of Alabama and nationally. In 2017, she founded Alabama Rare, an organization advancing healthcare policy and education for Alabama’s rare disease community. In 2021, she, alongside parent researchers/advocates, co-founded the gutsy perspective, a research initiative driven by members of the short bowel syndrome community to ensure the patient and family narrative is represented in research and patient-centered outcomes. Swapna was born with short bowel syndrome and received a small intestine transplant 10 years ago. Swapna resides in Huntsville, AL, the acclaimed rocket city.

Bradley Ogline is a Certified Registered Nurse Anesthetist at UPMC Magee women’s hospital. Bradley attended Gannon University for nursing school and the University of Pittsburgh completing master's in nursing for anesthesia. Bradley is also a small bowel patient and received a small bowel transplant in 2019.

Edie Portnoy has a unique lense on nutrition support. She is a Registered Nurse by trade, and has had her own personal health journey within the GI world. She is an intestinal transplant patient dependent on TPN. She proudly served as a past board member of Intestinal Rehab and Transplant Unwrapped. In her spare time, she is an avid baseball fan.

Angela is a pediatric resident physician at Stanford University pursuing a career that prioritizes promoting equitable and compassionate care for patients and their families with gastrointestinal disorders. As a child of a Vietnamese immigrant, she is passionate about promoting health literacy and language equity through community-based participatory methods.  Her current scholarly work focuses on improving the caregiver experience for families of children with intestinal failure in their initial transition home from hospital. She is passionate about involving caregivers in the research process to create more meaningful, tailored resources and social supports. By listening to the voices of those with lived experiences, she aims to develop healthcare models that are not only effective but also timely and responsive to the needs of families and hopes to advocate for a more inclusive approach to pediatric care that prioritizes the perspectives of caregivers and enhances overall patient outcomes.

Gil Hardy is Emeritus Professor of Clinical Nutrition in Auckland New Zealand and a Fellow of ASPEN. He trained with Nobel Prize Winner, Sir Hans Krebs at the University of Oxford and with colleagues at Baxter Labs and St Marks Hospital, London developed the first 3 litre PN bag for patients with intestinal failure. Professor Hardy has over 250 publications from his research with lipids, glutamine, micronutrients and most recently chyme reinfusion therapy. Gil has been associated with Oley’s sister groups; PINNT (UK) and PNDU (Aus/NZ) since their formation and was the founder of the ASPEN international clinical nutrition section (ICNS). He has served on the ASPEN Board of Directors and represented ASPEN on the International Human Rights for Clinical Nutrition working group. He has an international reputation with many awards including the Distinguished International Nutrition Support Specialist Award and is the 2025 ASPEN Champion.

Janelle Flaherty, RD, CNSC has over 15 years of experience in the home health arena as a clinician, and leading a team of enteral dietitians who work with providers, patients, and their families to navigate their tube feeding journey in the home, from management of tolerance challenges to troubleshooting of tube, tube site, and supply issues. She also works closely with distributors and manufacturer partners to evaluate products and manage supply chain changes and challenges.

Kerri Shingleton, MS, RD, LD, CNSC is a Clinical Dietitian and the Home Enteral Nutrition Coordinator at the Vanderbilt Center for Human Nutrition. She earned her Master of Science degree and completed her dietetic internship at the University of Tennessee. Last year, Kerri was the lead project manager for the enterprise-wide transition to an ISO-compliant enteral feeding system at Vanderbilt University Medical Center.  She is an active member of the American Society of Parenteral and Enteral Nutrition (ASPEN) and serves on the Global Engineered Supplier Association’s (GEDSA) retail pharmacy subcommittee. Kerri is passionate about inspiring and training dietitians to learn more about feeding tubes and safe enteral practices.

Ben has served as the Executive Director of the Global Engineered Device Supplier Association (commonly known as “GEDSA”) for the last 3 years but has been involved with the organization since 2012, serving on various committees and on the Board of Directors.  Prior to GEDSA, Ben was a VP of Engineering and Product Development in the medical device industry.  He is a subject matter expert on enteral/oral syringes, dosing accuracy, nasogastric feeding tubes, enteral connectors, and enteral medication/pharmacy accessories.  Ben is an inventor on over 75 patents and holds a BS in Industrial Engineering from the Georgia Institute of Technology.  Ben is very passionate about advancing patient safety, improving patient outcomes, enhancing the user experience, and the innovations that support these passions.

Mary Beth is a postdoctoral scholar at the University of Iowa College of Nursing.  She has 19 years of experience in pediatric vascular access where she worked as a nursing practice leader for CLABSI and pediatric vascular access.  In this role she also was the lead educator for central venous catheter (CVC) care and maintenance and trainer for family caregivers caring for the CVC in the home.  Her dissertation work was centered on learning more about the caregiving experience in the home for caregivers of children with intestinal failure and she will continue this course of study in her postdoctoral work.

Jasmine Sturr is a chemist and patient living with Secondary Gastroparesis and Chronic Intestinal Pseudo Obstruction from Juvenile Onset Parkinson's Disease. While pursuing a degree in chemistry, she underwent Deep Brain Stimulation Surgery, Jejunal tube placed, and began TPN. After graduating in 2016 with a Bachelor of Science in Chemistry from the University of Redlands, she went home to work on her health. She intended to pursue medicine, but her health never was stable enough. She began the journey through her 20s of using science and research to solve problems that arose with her health and ended up developing a treatment for her tube leakage and burns. Teaming up with her dad, she worked to get her product on the market and partnered with Lumaclean. Now she designs products using her chemistry knowledge and lived experience and hopes to encourage others to join in and help find future solutions.

Michaela Shelley is a social worker who has also been an HEN/HPN consumer for over 12 years. Drawing from her personal experience she’s become a passionate advocate working to improve the quality of life for adolescents and young adults(AYAs) navigating chronic illnesses. She enjoys using her firsthand knowledge to raise awareness, create meaningful support systems to support those in need, and promote resilience. In 2012, when she recognized the need for connection and mutual support, Michaela created an online support group that has since connected over 600 AYAs with feeding tubes from nearly twenty countries. Through this platform, she helps foster a sense of community, empowerment, and shared understanding, helping young people navigate the complexities of chronic illness with strength and solidarity.

Dr. Mundi graduated from the University of California, San Diego with majors in Psychology and Chemistry.  He obtained his MD from the University of Southern California.  Dr. Mundi completed a residency program in Internal Medicine followed by a fellowship in Endocrinology at the Los Angeles County-University of Southern California Medical Center and subsequently an NIH training grant.   Dr. Mundi is currently a Professor of Medicine and holds the leadership positions of Inpatient Nutrition Core Group Chair, Medical Director of Clinic Dietetics, member of ASPEN Board of Directors, and Medical and Science Advisor for Oley Foundation.  He is also the medical director of the Home Enteral Nutrition program and the associate program director of the Home Parenteral and Enteral Nutrition program.   Within the HPEN program, Dr. Mundi takes a very active role in research with the goal of continuing to improve the quality of nutrition support.

While serving patient populations during her career at the Centers for Disease Control and Prevention, Joy became a patient herself. In August 2010, she experienced an acute onset of severe GI symptoms, which was later diagnosed as post-viral gastroenteropathy causing severe dysmotility throughout her gastrointestinal tract. She was on home enteral nutrition for 13 years, with intermittent periods on IV nutrition. Joy believes her life improved when she began going with the flow of living with a chronic condition instead of resisting it. This included Joy's acceptance of relying on a feeding tube to nourish her.  Joy is a longtime friend of the Oley, a relationship which began in 2015 when she attended her first conference and became an ambassador. Joy also served on the Board of Trustees for 6 years, including as secretary and vice president. Upon completing her board term, Joy joined the Advisory Council.

Aeisha Reese is a native of Flint, MI and has lived in New York for 10 years. Shortly upon moving to NYC to pursue a career on Broadway, she faced several health complications with Crohn’s Disease. After being in a coma for two months, her intestines were completely removed. In order to live she had to receive a small bowel "intestinal” transplant. She created a support group and ministry that uses prayer and the arts as tools to inspire patients, revealing that they have the power to overcome any diagnosis through the Spirit of Christ. On May 19, 2019 she received her 2nd intestinal transplant. However, in 2022, she faced rejection that resulted in its removal, and currently endures short gut syndrome. Aeisha stands 20+ surgeries later, faithfully awaiting the 3rd transplant. She is an Actress, Musician, Inspirational Speaker, Patient Advocate, and CEO of Miracle Work Ministries.

Dr. Hassan S. Dashti is an Assistant Professor in the Department of Anesthesia, Critical Care and Pain Medicine at Massachusetts General Hospital (MGH), Harvard Medical School. He is a registered dietitian and a research scientist with interest in clinical nutrition, chronobiology, and sleep. His research seeks to understand the relationship between nutrition and sleep and the role of food timing as a disease risk factor in healthy and patient populations. His work is funded by grants from the NIH, ASPEN Rhoads Research Foundation, and the American Academy of Sleep Medicine. He received his PhD from Tufts University’s Friedman School of Nutrition after which he completed his dietetic internship at Brigham and Women’s Hospital, Boston MA.

I have been a Registered Nurse since 1975. I am no longer practicing. I was diagnosed with SBS after extensive surgery for carcinoid tumor in March 2008. I required IV nutrition and had a colostomy which could have been reversed. However, my small bowel didn't behave, and so Edgar is still with me! I experienced a lot of complications but had a fantastic medical team that saw me through months on Hospice and eventual health. I have written articles for Oley in the past under the title "You don't know what you don't know". These were based on my experience with HPN and dealing with a colostomy and the intricacies of the medical institutions. I am currently very stable and am enjoying life in Charleston, SC with my family!

Dr. Carol Ireton-Jones received her PhD and Master’s degree in Nutrition from Texas Woman’s University. Her undergraduate degree in Nutrition and Dietetics came from Texas Tech University where she also received her clinical training.  She developed The Ireton-Jones equations for estimating energy requirements in hospitalized patients used nationally and internationally.   Dr. Ireton-Jones provides out-patient nutrition care for people with GI disorders including IBS, gastroparesis and IBD, and those who require home parenteral and enteral nutrition. She has lectured nationally and internationally on a variety of nutrition topics and has over 200 peer reviewed papers and abstracts and 34 book chapters. Recent honors and awards include the 2022 Award for Excellence in Entrepreneurial Practice from the Academy of Nutrition and Dietetics and the 2023 Chancellor’s Alumni Excellence Award from Texas Woman’s University. She recently completed the 2nd edition of Outpatient Nutrition Care: GI, Metabolic, and Home Nutrition Support available on Amazon.com.

Swapna is an advocate, speaker, consultant, and researcher in rare and chronic disease healthcare delivery and patient experience. Through her platform, Swapna Speaks, Swapna has spoken across the world to various companies and associations and has given a TEDx talk. Swapna also does health care advocacy, research, and policy work for the intestinal failure, vascular access, and broader rare disease communities in her home state of Alabama and nationally. In 2017, she founded Alabama Rare, an organization advancing healthcare policy and education for Alabama’s rare disease community. In 2021, she, alongside parent researchers/advocates, co-founded the gutsy perspective, a research initiative driven by members of the short bowel syndrome community to ensure the patient and family narrative is represented in research and patient-centered outcomes. Swapna was born with short bowel syndrome and received a small intestine transplant 10 years ago. Swapna resides in Huntsville, AL, the acclaimed rocket city.

Mark DeLegge, MD has a long history of patient care in nutrition support. He is the President of DeLegge Medical and a gastroenterologist/hepatologist. He currently serves as the senior medical director for IQVIA where he is responsible for developing strategies for new drug and new medical device development and approval for a multitude of disease states. Dr DeLegge has a long history in managing parenteral and enteral nutrition patients and has published over 40 book chapters and 100 peer reviewed articles. He lives in Charleston, SC

I, Crystal Killian have been on PN via port since 2017. During this time, I have also had several NJ and NG tubes. I am an active member of End Drug Shortage Alliance (EDSA) and an active advocate for people utilizing alternative nutrition and who have neuromuscular disease (NMD). I have lived in The Netherlands and traveled widely across the USA and EU. I live with mitochondrial myopathy that has led to GI dysmotility.

Christine Hahner RD, LD, CNSC is a registered dietitian and certified nutrition support clinician for more than 10 years. She started her career working in the ICU and thoracic IMC. Five years ago, she made the transition to home infusion. She initially worked as a sales liaison for nutrition support patients, eventually transitioning to the management of home PN. Christine prides herself in being a strong advocate for her patients ensuring they receive the best care and focuses on their quality of life. In her free time, she enjoys spending time outdoors with her husband and two kids.

Maria Karimbakas is a registered dietitian and certified nutrition support clinician, who received her Bachelor of Science from the University of Vermont and completed her dietetic internship at Brigham and Women’s Hospital, Boston.  She has been providing clinical care and education to short bowel patients for over 25 years and worked at the Nutritional Restart Center, the first intestinal rehabilitation program.  Maria has co-authored several abstracts, papers, and book chapters on the subject of diet and SBS.

I'm a Nutrition Patient Liaison for Optum Infusion Pharmacy with over 16 years of personal and professional experience in supporting patients and families with managing complexities associated with Parenteral Nutrition Support therapies.  I have 3 children, my oldest, Olivia, has Mitochondrial Disease, and she has been on nutrition support therapies for 16 years. My son, David, has Gastroparesis, and has been on PN for a year. My personal experience enhances my ability to support others and help them achieve a higher level of quality of life despite the challenges of the therapy.  In addition, I am a part of the Nemours Children’s Health System Family Advisory Board, and CLABSI Taskforce Board, as well as a member of the Pennsylvania Medicaid Parent Sub-Committee, and Medicaid MCO Shift-Nursing Work Group.  Being an active member of the community, through sharing resources, education, and support with others is my passion.

Dr. Jill Genua is a board certified surgeon in Albany, N.Y. She is a graduate of the Siena College/Albany Medical College Program in Science, Humanities and Medicine and received her MD degree from Albany Medical College. She completed a general surgery residency at Stamford Hospital/Columbia Presbyterian followed by a fellowship in colorectal surgery at the Cleveland Clinic in Florida. After spending the majority of her career in a hybrid academic and community colorectal surgery practice in Stony Brook, NY, Dr Genua returned to Albany in 2020. Over the past five years,  she has developed a focus on complex nutrition support. Dr. Genua directs the inpatient nutrition support team, the home parenteral and enteral support program and the Department of Surgery Division of Perioperative and Metabolic Support at Albany Medical Center.

Amanda Gilhool, MS, RDN, LDN, CNSC is and has been a clinical dietitian and instructor at various Philadelphia-based organizations, including Penn Medicine, Drexel University, and Chestnut Hill Hospital.  She earned her bachelor’s degree from Temple University and her master’s degree in Human Nutrition from Drexel University.  While living in Florida for many years, she worked at hospitals in the Tampa Bay and Miami areas and taught undergrad Intro to Nutrition courses. Amanda moved back to Philadelphia in 2020 and has been working in the area ever since. She is in the process of launching her own practice specializing in home tube feeding. When not working, she enjoys playing games, eating (of course), and gardening.

Jeannie Counce, FNHIA is the Editor of INFUSION magazine at the National Home Infusion Association. With more than 25 years experience in the industry, she writes about a variety of subjects from sterile compounding standards to operations to clinical practice. She often writes about patient-related issues from the patient perspective which assists in NHIA's advocacy efforts to secure meaningful coverage and commonsense regulations for infusion therapies so patients can live health, productive lives.

Neal Piper is the Founder and CEO of Luminoah, a MedTech company dedicated to making enteral nutrition delivery simpler, smarter, and easier for everyone. Before founding Luminoah, Neal spent his career advancing healthcare in the U.S., Asia, and Africa. He began his career in Pfizer’s Neuroscience Division and later served as President of the Global Health Fellows Alumni Business Network. Neal also worked as a Global Malaria Advisor in Pfizer’s Emerging Markets Division and led the expansion of healthcare programs across 18 countries at Population Services International. Neal has founded multiple ventures, including a home healthcare company and a nonprofit organization. Driven by a mission to improve healthcare through technology, he is committed to creating meaningful change that improves lives.

Elena Stoyanova is a registered nurse with a background in critical care and leadership, currently specializing in home infusion therapy and nutrition support. With over 12 years of  nursing expertise, she serves as the Clinical Nurse and Nursing Coordinator at Nutrishare. Elena has played a key role in establishing the Nutrishare Nursing Network, connecting consumers with top-tier home health nursing agencies. She focuses on comprehensive nursing assessments, multidisciplinary care coordination, and quality improvement initiatives to enhance consumer safety and knowledge. Elena's commitment to patient-centered care drives her efforts to improve healthcare outcomes and deliver exceptional services.

Dr. Buchman is a Medical Director of Gastroenterology at Elevance Health and  Professor of Surgery at the University of Illinois at Chicago where he is the Medical Director of the Intestinal Rehabilitation and Transplant Program.  He took his undergraduate training at Northwestern University and medical degree at the Chicago Medical School, residency at Cedars Sinai Medical Center in Los Angeles, and fellowships in Nutrition and Gastroenterology at UCLA and Emory University.  He has a Master's of Science Degree in Public Health from UCLA.  His previous faculty appointments included  the Baylor College of Medicine and the University of Texas at Houston and Northwestern University. Dr. Buchman, editor of Gastroenterology Clinics of North America, has authored nearly 250 publications. Dr. Buchman was president of the American Federation for Medical Research (AFMR), chaired the FDA’s Gastrointestinal Drugs Review Committee and the AGA's Nutrition Section, and served on the Congressional Commission on Digestive Diseases.

Beth is a national patient safety advocate, author and speaker who represents patients through patient associations, serving on boards, and being a voice of the patient on national committees and task forces with over a decade of direct vascular access and parenteral and enteral focus. She has a PhD in Training and is a mother to six children with special needs, including a son who lives with a central line for lifetime nutrition support.

Jessica earned her Bachelor of Science degree in Dietetics from James Madison University and completed her internship at Johns Hopkins Bayview Medical Center in Baltimore. She gained extensive experience working in hospital settings and spent some time in long-term care. Jessica particularly enjoyed the challenge of managing complex parenteral nutrition (PN) patients, which became a key focus of her career. Over 15 years ago, she discovered her passion for home infusion, a field she continues to embrace. She has a deep enthusiasm for PN and is always eager to learn and share knowledge about it. Since 2020, Jessica has served on the VASPEN board as the Director of Industry, where she thrives on building relationships with professionals in the field. Outside of her work, Jessica enjoys spending quality time with her husband, two daughters, and their yellow Labrador Retriever. She also loves tackling home renovation projects and spending time outdoors.

Amy Braglia-Tarpey has been a registered dietitian since 2003, earned the designation of board-certified specialist in renal nutrition, and has been a certified nutrition support clinician since 2009. She received her bachelor’s degree from the University of Arizona and Master of Science degree in Nutritional Science from California State University, Long Beach. Amy started her career as a renal dietitian, caring for those with Chronic Kidney Disease (CKD) and contributing to nutrition research. She then transitioned to progressive leadership roles in infusion care, leading home parenteral and enteral nutrition (HPEN) programs and working to improve the experience of both consumers and clinicians. Between her extensive experience with CKD and HPEN, Amy has developed a a passion for patient safety and quality of life. She enjoys sharing her expertise through multiple publications, speaking engagements, and collaborative projects. Amy is the Director of Nutrition Product Line for Amerita Specialty Infusion.

I, Crystal Killian have been on PN via port since 2017. During this time, I have also had several NJ and NG tubes. I am an active member of End Drug Shortage Alliance (EDSA) and an active advocate for people utilizing alternative nutrition and who have neuromuscular disease (NMD). I have lived in The Netherlands and traveled widely across the USA and EU. I live with mitochondrial myopathy that has led to GI dysmotility.

TheVascularGuy is an Interventional Vascular Access Specialist RN with 5yrs in Pediatrics/Adult ER. After placing thousands of IVs in the ER, transitioning into vascular access specialty was a huge eye opener to how much he DIDN’T know about the invasive procedures he was performing. His passion for educating both clinicians and patients bled into the social media space. Currently the CEO of IntraCav.ai, he hopes to democratize the skills and knowledge through social media and his company in hopes to improve patient care at scale. 

Gaby Luna is a mother to two boys with special needs. Her oldest son has short bowel syndrome due to gastroschisis & relies on IV nutrition and enteral nutrition. She is passionate about advocacy and has served on the Caregivers in Crisis campaign in Massachusetts and is certified by Boston Children's in public policy advocacy. Gaby is the admin and creator of the Central Line Travelers support group on Facebook & helps supports families daily. Gaby serves as the Massachusetts Hub Leader for The Global Gastroschisis Foundation & has also advocated at DDNC & Rare Disease Week on Capitol Hill. Gaby has a bachelor's degree in Business & is currently pursuing a nursing degree.

Lauren recently graduated with her Bachelor of Social Work degree and is working toward a master's in social work. She has been on HPN for 19 years and loves sharing the life it gives her with her wonderful community of loved ones. Lauren will never turn down a themed party, vintage glasses, or a Code Red Mountain Dew. She lives with her partner, Taylor, and puppy dog, Elway, in Denton, Texas.

I'm a Nutrition Patient Liaison for Optum Infusion Pharmacy with over 16 years of personal and professional experience in supporting patients and families with managing complexities associated with Parenteral Nutrition Support therapies.  I have 3 children, my oldest, Olivia, has Mitochondrial Disease, and she has been on nutrition support therapies for 16 years. My son, David, has Gastroparesis, and has been on PN for a year. My personal experience enhances my ability to support others and help them achieve a higher level of quality of life despite the challenges of the therapy.  In addition, I am a part of the Nemours Children’s Health System Family Advisory Board, and CLABSI Taskforce Board, as well as a member of the Pennsylvania Medicaid Parent Sub-Committee, and Medicaid MCO Shift-Nursing Work Group.  Being an active member of the community, through sharing resources, education, and support with others is my passion.

Celia is a 29-year-old woman who has been on parenteral nutrition her entire life. Dealing with short bowel syndrome and a variety of gastrointestinal symptoms, she has had different experiences and feelings regarding her relationship with food and eating. She enjoys the Oley conference as it allows her to see a wide network of friends who share her experiences. When she's not managing her healthcare, Celia spends time with her family, including her 2 cats. She enjoys crafts, reading, and the occasional game of Dungeons and Dragons.

Dr. Miles is Professor of Medicine at the University of Kansas School of Medicine. He trained in endocrinology and has published extensively on nutrition support science. His word includes multiple studies of macronutrient metabolism, with special emphasis on lipid fuels. He  is a fellow of the American Society for Parenteral and Enteral Nutrition, and was awarded the Stanley Dudrick Research Scholar Award by that organization.

Bethany is a self-described professional patient. She currently manages her complex medical team, integrating her home care and daily medical needs. As a patient advocate, she volunteers with advocacy groups to help bring awareness to legislators for patients living with rare disease. She also has served on research steering committees providing patient perspectives. Her full-time job is as an Architect and Program Manager. She has been an integral part of award-winning design teams across the country and around the world. Bethany is also a Founding Board Member of the 501(c)3 now known as Intestinal Rehab and Transplant Unwrapped where she helps bring the mission to life to ensure every patient, caregiver, and member of the intestinal disease community feels well-educated and supported throughout their journey with intestinal failure, intestinal rehabilitation, and intestinal and multivisceral transplantation. In her spare time she is an avid hiker, biker and loves to read.

Syed-Mohammed Jafri M.D. is a Gastroenterologist and Transplant Hepatologist at Henry Ford Hospital in Detroit. He was born in Niagara Falls, NY and raised in Detroit, Michigan. His education includes Residency in Internal Medicine at The Mayo Clinic in Rochester, Gastroenterology Fellowship at the University of Texas and Transplant Fellowship at the University of Michigan. He has been at Henry Ford Hospital for over fifteen years with roles during that time including Professor of Medicine, member of the Institutional Review Board for research, Fellowship Director for Gastroenterology and Transplant Hepatology, and Medical Director for Intestine and Multivisceral Transplantation. His research includes hepatology, transplant and intestinal rehabilitation.

Dr. Sharon Irving is Professor of Pediatric Nursing and holds the Miriam Stirl Endowed Term Chair in Nutrition at UPENN School of Nursing. She practices as a Nurse Practitioner in Gastroenterology, Hepatology, and Nutrition at Children’s Hospital of Philadelphia (CHOP) and serves as Clinical Nurse Scientist in Critical Care. Her research focuses on nutrition therapy for critically ill infants and children, emphasizing clinical practice, interdisciplinary collaboration and education. Dr. Irving has collaborated on numerous articles and book chapters on nutrition in clinical practice. She actively engages in educating patients, families, and future providers. In her clinical practice and her research, she emphasizes inclusivity, social justice, and improving health literacy and equity across populations. Dr. Irving’s contributions have earned her fellowships in prestigious organizations, including the American College of Critical Care Medicine, the American Academy of Nursing, and the American Society of Parenteral and Enteral Nutrition (ASPEN).

Karen Martin is the Director of Sales Learning and Development for Amerita Specialty Infusion Services and a Registered Dietitian Nutritionist of 40 years. Karen is a Fellow of ASPEN and 2023-2025 Chair of ASPEN's Home & Alternate Site Section.  She chartered ASPEN’s Texas Alamo Society of Parenteral and Enteral Nutrition; coauthored ASPEN’s Safe Practices for Enteral Nutrition Therapy and authored the Home Enteral Nutrition chapter of ASPEN’s Enteral Nutrition Handbook. Karen was awarded ASPEN's Home Care Award in recognition of excellence in nutrition support to home care patients.  She enjoys equipping Amerita’s team, awarded ASPEN's Clinical Nutrition Team of Distinction Award, to deliver safe and excellent home infusion. Karen is excited to present at Oley 2025!

Jaden, He/Him

I am a consumer of HEN and utilize IV hydration therapy.  I have struggled with my nutrition since adolescence and began oral nutrition therapy in high school.  At 19 I got my first nasal feeding tube and transitioned to a GJ 4 years later.  I have worked at hospitals and aquatic facilities, hiked, climbed, camped, paddle boarded, and tried to keep up with my friends all while hooked to enteral feeds. Through my nutrition journey I have worked to make nutrition support work for my life and not my life for nutrition support.  Being on HEN has given me my life back and allowed me to access all the things that bring me joy! I am eager to advocate and innovate functional and sustainable products and supplies for those of us on nutrition support journeys.