Ashley Roberge-Boire is a Licensed Independent Clinical Social Worker who practices medical social work at Boston Children's Hospital for the Center for Advanced Intestinal Rehabilitation. Ashley aims to support patients and caregivers who are impacted by intestinal failure by providing concrete resources, psychosocial support, and community advocacy. Ashley specializes in school matriculation, community building through social media and group work, and research. Ashley's publications include, "Appearance-based praise and criticism: Does the source matter?" and, "Hearing vs. engaging in negative body talk: An examination of adult men." Ashley has also presented a poster at PIFRS titled, "Insurance Woes: Who is Responsible for Covering Medical Supply Gaps? A Case Study Exploring Issues with Accessibility to Intestinal Failure Medical Supplies." Ashley enjoys building meaningful relationships with patients and caregivers, and finds fulfillment in watching them meet milestones - big and small!

Bettemarie Bond is an Oley Ambassador and has been connected continuously to an IV for the last 33 years due to a motility disorder and biliary issues. She started on TPN as a teenager and defied doctors predictions by gaining her independence. She worked as pediatric Occupational Therapist and taught gymnastics all while infusing. Bette has Mitochondrial Myopathy and Dysautonomia. She is passionate about advocacy and uses her limited energy to spread awareness. She has presented across the country and internationally. Bette has co-authored publications in the Journal of Parenteral and Enteral Nutrition and Nutrition in Clinical Practice. She volunteers on ASPEN’s Public Policy Committee, representing the patient voice. Bette was chosen for Oley's Innovator/Advocator Award and ASPENs Lyn Howard Nutrition Support Consumer Advocacy Award for the second time for her admirable advocacy activities.

Carol Ireton-Jones, Ph.D., RDN, CNCS, FASPEN, FAND
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 and these are widely used nationally and internationally. Dr. Ireton-Jones provides out-patient nutrition care for people with GI disorders including IBS, gastroparesis and IBD, as well as those who require home parenteral and enteral nutrition. She continues to measure metabolic rate as an important part of determining individual energy expenditure in many diverse types of people. She has lectured extensively nationally and internationally on a variety of nutrition topics.

Cynthia is a home tube feeding expert, educator and strategist having worked in homecare for over 25 years passionately facilitating patients’ successful transition from hospital to home on tube feeding. She works to promote positive clinical outcomes and believes a patient’s positive relationship with their feeding tube impacts adherence and quality of life. She developed her passion for nutrition support interning at the City of Hope National Medical Center in Southern California. In 2023, Cynthia received ASPEN’s HPEN Trailblazer Award. Today, she works as a consultant to industry in the area of home tube feeding and enteral innovation and enjoys presenting round tables, clinical posters, webinars, and case studies in the area of home care tube feeding. She has been a guest speaker for the Oley Foundation, CMSA, NHIA, ASPEN and the Academy of Nutrition and Dietetics on a variety of topics related to home tube feeding.

Emily entered the world of nutrition support with her son, who was born with short bowel syndrome. She is the creator and administrator of the Short Gut Syndrome Family Support Group on Facebook and the author of the website shortgutsupport.com. Through these sites, she works to improve access to information about SBS, support patients and families, and bridge the gap between the medical community and the patient. Her roles as a mother and as a group moderator have inspired her to seek in-depth knowledge of short bowel syndrome, including parenteral and enteral nutrition. She uses that knowledge to speak and write as she advocates for patients in a variety of settings. She enjoys volunteering with special education students and working with the Oley Foundation.

My name is Erin Danzer, I’m 25 years old from San Diego California. I’m a patient advocate living with an ultra rare disease called Fibrodysplasia Ossificans Progressiva.

Dr. Erin Nance is a double-board certified orthopedic hand surgeon and runs her own private practice in New York City. She is a fierce patient advocate and champion for peer-to-peer health. Her TikTok channel @littlemissdiagnosed has been viewed over 100 million times. Those stories are currently the subject of her upcoming memoir, This Is Not Medical Advice, to be published by HarperCollins in March 2025. She is the Co-Founder and CEO of FeelBetr, the first health-focused social media platform where patient experiences and expert knowledge are valued and accessible.

Gaby is a kind compassionate human.

She is a mother of two boys , one who has lived on nutrition support his entire life. In 2016 her son was born with gastroschisis that led to short bowel syndrome & she had to learn all about it.

She became her sons best advocate and voice which then led her to became a patient advocate professionally for an infusion pharmacy. Gaby Luna is also the support cordinator and Massachusetts state leader for The Global Gastroschisis Foundation. She is a consultant for short bowel syndrome pediatric education & a member of the caregivers in crisis campaign in MA. Gaby has advocated at Rare Disease Week in DC & DDNC. She has a passion for advocacy and change & is the creator and admin of the Central Line Travelers page on FB. Gaby also has a bachelors in business & is continuing her education.

Jana was born with chronic intestinal pseudo-obstruction (CIPO) and has been fed intravenously for 39 years. Being a part of the parenteral support community has offered her a place of understanding and deep friendships. After completing a degree in social work, she worked in Pastoral Care ministry at her local church. Along with the practical complexities and issues surrounding managing a chronic illness, she is also interested in the ways we discover meaning and purpose in the lives and circumstances we find ourselves in. To further explore these ideas of what it means to live a full life in a body with profound limits, she is pursuing a postgraduate degree in Theology and Disability from the University of Aberdeen. Currently, a full life looks like adventures with her husband Chase, pup Linus, and time with the family and friends who make waking up each day a gift.

Jessica McCaig, LICSW, PMH-C
I have been working in the Social Work field since 2010 and made my way to The Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children's Hospital (BCH) in 2015. My prior experience in the NICU at BCH and in Early Intervention helped prepare me to work with patients and families with short bowel syndrome, by providing me the opportunity to see the life that medically complex families lead both in the intensive inpatient and more community based/ home settings. I am very invested in supporting patients and families with comprehensive care, specific to their specialized nutrition needs. I am also passionate about improving the quality of life of our patients and families. I feel extremely privileged to learn from each and every family as to how we can improve their experience within our hospital, clinic, and in their outside world.

Joan Gordon, LCSW, has been employed at UCLA Medical Center since 1987 and has no plans to ever retire! She has worked with TPN and Pediatric Gastroenterology patients for 30+ years and currently runs a monthly support group for “Young Adults on TPN”. In addition to GI/TPN , Joan heads the Staff Development Program for Clinical Social Workers at UCLA and co-chairs the Hospital’s Domestic Violence Committee.

Joan has been privileged to present at Oley in the past: In 2004, she led a Roundtable on “Cultural Issues Impacting Nutritional Support”; In 2008, a Roundtable “Letting Go, Preserving Family Life”; and in 2019, Joan lead a break-out session on “The Birds and The Bees”: Friendship, Dating and Relationships with a Chronic Condition.

CELA Atlanta, GA
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. Kelley serves on the Parkinson’s Foundation Georgia Chapter Advisory Board. She has been selected as a Super Lawyer Rising Star each year since 2020.

Kelley is also the mother of a child with Short Bowel Syndrome. She brings this personal experience to her Special Needs Planning practice.

I'm Kristy and my chronic illness journey began 36 years ago when I was 8 years old. Growing up with chronic health issues can be tough. I was one of the youngest patients sent home on HPN in 1988. My doctors didn't expect me to live past eleven years old, but I proved them wrong! While my journey hasn't been easy it's taught me a lot about myself, my faith, and how to stay positive in an always changing healthcare system. My parents are my biggest supporters and I wouldn't be here without them. They have always advocated for me when I was unable to advocate for myself. To this day they continue to love and support me. In 2021, I was awarded Advocate of the Year with The Oley Foundation. My goal is to continue advocating for those on HPN and taking my advocacy efforts to the next level!

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. In her current role, she works as the Program Manager for the Optum Intestinal Rehab program.

My name is Mary Gallotto; I graduated with my BSN from Northeastern University and received my MSN and graduate certificate in Nursing Education at the University of Massachusetts. I am committed to developing innovative teaching strategies alongside my colleagues to keep patients discharged home with Central venous catheters (CVC) safe and free of central line-associated bloodstream infections (CLABSI) and associated complications. I have worked on committees to create CLABSI bundles, PPSQ grant research projects, and an evidence-based Mentorship program. I co-developed a curriculum for the simulation lab that provides a lifelike home experience for caregivers to prepare and administer Parenteral Nutrition to a high-fidelity mannequin before hospital discharge. Finally, I published an article, Caregiver Training for Pediatric Home Parenteral Nutrition. These experiences allow me to pursue my passion for caring for this patient population alongside a multidisciplinary team, enabling these patients to live and thrive outside the hospital environment.

Nicholas Jackson is a dedicated paramedic whose passion for emergency medicine was ignited by his volunteer experience in Haiti following the 2010 earthquake. With extensive clinical experience in prehospital, emergency, and critical care settings, Nicholas thrives in the challenges of rural Maine. He is heavily involved in quality improvement initiatives and is a firm believer in continuous education, currently working towards his goal of attending medical school.

Ruby Barrios, a 2016 Oley Celebration of Life Award recipient, is a first-generation college graduate from the American Musical Dramatic Academy and has used her Acting BFA to propel into the entertainment landscape. She is a Project Manager in commercial production and Young Lion Creative Academy recipient for the Cannes Film Festival.

Born with a chronic illness, she aims to eliminate the stigma that children are too young to understand/experience difficult life situations through the arts and social outreach. Ruby published "Ruby’s Button," a children’s book that celebrates self love and how bodies change when undergoing surgeries. She had a Barnes & Noble book signing and soon Ruby’s Button transformed into a musical which was recognized on Spectrum News.

She voices LaRose in Netflix's LOL Surprise! and teaches for CoachArt. She was awarded the CoachArt Activity of the Year Award and continues to look forward to advocating for underrepresented stories.

Director, Pediatric Intestinal Rehabilitation Center
Assistant Professor of Pediatrics (in Biomedical Informatics)
Division of Pediatric Gastroenterology, Hepatology, and Nutrition
Columbia University Irving Medical Ctr.
New York, NY

SBS Patient | Advocate | Researcher
the gutsy perspective
Huntsville, AL

SBS Parent | Advocate | Researcher the gutsy perspective
University of Nebraska Medical Center
(UNMC)
Omaha, NE

Associate Director of clinical medicine. Albany Medical Center
Albany, New York  2009-2024

SBS Patient Ambassador

Nicholas Jackson is a dedicated paramedic whose passion for emergency medicine was ignited by his volunteer experience in Haiti following the 2010 earthquake. With extensive clinical experience in prehospital, emergency, and critical care settings, Nicholas thrives in the challenges of rural Maine. He is heavily involved in quality improvement initiatives and is a firm believer in continuous education, currently working towards his goal of attending medical school.

Beth Lyman has over 40 years of experience in nutrition support nursing with the last 30 years in pediatrics. She retired from full time work as the Sr. Program Coordinator of the Nutrition Support Team at Children's Mercy Kansas City in 2019. She now does part time consulting. Beth is an active member of ASPEN as past member of the board of directors and chair of the Nursing Practice Section. She currently chairs a workgroup to define best practice for verification of balloon gastrostomy tube placement and co-chairs a group on nasogastric tube placement verification in the NICU. Her research focuses on safe enteral formula delivery. Beth received the Clinical Excellence Award from ASPEN in 2023.

Dawn Adams,MD, MS, CNSC is an associate professor of medicine in gastroenterology and certified nutrition support specialist at Vanderbilt University Medical Center (Nashville, TN). She is the medical director of the Center for Human Nutrition which manages approximately 150 adults on home parenteral nutrition as well as patients with short bowel syndrome not requiring parenteral support. She also serves as a medical advisor for quality control for a local infusion company. Dr. Adams is extremely proud to lead an amazing team of specialists including providers, pharmacists, dietitians, nurses and research staff to improve care for patients with intestinal failure.

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 with the Department of the Navy. 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.

Dave was diagnosed with Crohn’s Disease at age 15. He was diagnosed with short bowel syndrome and has required TPN therapy since November 1995, due to emergency surgery from an intestinal blockage. Through education, experience, and a strong network, Dave has been able to work full time as a sales rep, and stay active exercising, running, traveling, and producing commissioned art. Giving back to the community is important to Dave and he has worked as a Consumer Advocate at ThriveRx and is also a member of a Cincinnati-area short bowel syndrome support group.

Marion Winkler, PhD, RD, LDN, CNSC is Professor of Surgery at Brown University Alpert School of Medicine and a Surgical Nutrition Specialist at Rhode Island Hospital. Dr. Winkler has expertise in managing enteral and parenteral nutrition and in the nutritional management of short bowel syndrome. Dr. Winkler received a BS in Nutrition from Case Western Reserve University, MS in Allied Health and Clinical Dietetic Research from the University of Connecticut, and PhD in Health Sciences from Rutgers University. She is a Past President of the American Society for Parenteral and Enteral Nutrition and the ASPEN Rhoads Research Foundation. Dr. Winkler serves as a Deputy Editor for the Journal of Parenteral and Enteral Nutrition and research editor for the Journal of the Academy of Nutrition and Dietetics . She is on the medical advisory board for LIFT-ECHO (Learn Intestinal Failure Therapy) Her research focuses on quality of life and patient reported outcomes in home parenteral nutrition.

Dr. Mercer is Professor of Surgery and Director of the Intestinal Rehabilitation Program at the University of Nebraska Medical Center in Omaha, Nebraska. 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. Dr. Mercer 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 parenteral nutrition 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 parenteral nutrition, surgical strategies in short bowel syndrome/complex intestinal problems, the role of the gut microbiome in human health, and all aspects of intestinal transplantation.