In this session Dr. Nance will talk about the insights learned from creating medical content that has been viewed over 100 million times and shared between over one million people. She will speak about the challenges of not feeling seen or heard in a patient/doctor interaction. Patients will feel confident and empowered to work with their doctors to solve their own problems.

Erin Nance, MD

Getting the right access to the right healthcare is a daunting task for well-resourced individuals. Healthcare resources are stretched thinner than ever before and administrative burden continues to increase. How do patients and HCW work together to overcome the struggles of the modern healthcare landscape?

Nicholas Jackson, NRP

Quality of Life (QOL) is a large, important but somewhat ambiguous topic in healthcare. QOL is interpreted and defined differently within and between members of the medical team as well as patients and caregivers

Jessica McCaig, LICSW, PMH-C

By Invitation only

Brought to you by Optum Infusion

Presented by Ironwood

Finding knowledgeable care and support can be difficult when living with a severe intestinal condition like Short Bowel Syndrome, particularly when you require IV nutrition and/or IV hydration and live far from an academic center. How to identify team members and practical tips for managing challenges will be explored.

Bethany Johnson
Architect, Rehab and Transplant Unwrapped, living with short bowel syndrome

Dave Vermette
Sales rep and Illustrator, former patient advocate, living with short bowel syndrome

Marion Winkler, PhD, RD, LDN, CNSC
Professor of Surgery at Brown University and Surgical Nutrition Specialist, Rhode Island Hospital

Dawn Adams, MD, MS, CNSC
Associate Professor and Medical Director, Center for Human Nutrition, Vanderbilt Medical Center

Presented by Takeda

Join us for an inspirational and educational event on a short bowel syndrome (SBS) treatment option. Hear from an expert healthcare professional and a patient treating her SBS.

Ann Michalek, MD

Misa

A fashion show for HEN and HPN patients living their best life! Show off how you wear your pump and take it wherever you go! Show us how you have adapted your nutrition delivery to fit your lifestyle! Show off adaptive clothing or just your favorite outfits!

Be sure to stick around a few minutes after the show so we can capture an amazing group photo.

Join all together as we take our annual conference group photo. Conference t-shirt attire is optional.

Brought to you by Optum Infusion

Presented by Nestlè Health Science

Join us for a live demonstration of an online tube feeding recipe builder program! Whether you’re a seasoned home blender or just interested in learning more, discover how the Blenderized Tube Feeding Recipe Builder empowers you to work with your clinician to create personalized, nutritious tube feeding meals with ease to meet individualized needs.

Robin Cook, MS, RD, LDN

Chef Anna Kim

Chef Robert Fedorko

Celebrate outstanding achievements with our patient, caregiver, and clinician awards, including the Joan Bishop Lifetime Achievement Award. Join us in showing appreciation to our Corporate Partners and Conference Sponsors and award prizes to the Leaderboard winners.

The Oley Board of Trustees and Oley Staff

In this forum general session format, speakers will cover the broad areas of:

• Going home with a child new to nutrition support
• Navigating school and college readiness
• Young adult decisions
• Slowing down and dealing with fatigue
• Legal considerations along the journey

Emily Hoopes

Gaby Luna

Ashley Roberge-Boire, MSW, LICSW

Erin Danzer

Bettemarie Bond

Kelley Napier, CELA

After hearing the connections along the life stages, now is your turn to choose one of the discussion topic areas for a discussion group moderated by the speakers. This 50 minute discussion time is your turn to share experiences, ask questions and connect with others who might be navigating a similar path.

Emily Hoopes

Gaby Luna

Ashley Roberge-Boire, MSW, LICSW

Erin Danzer

Bettemarie Bond

Kelley Napier, CELA

Young adults with chronic, complex health conditions have specific needs including developing independence, relationships, education, and careers. This is in addition to the responsibilities of managing their health care and interface with the health care system. This session describes the unique needs of the young adult dependent on HPEN and the experience of developing a support group to address these needs, from the consumer and health care professionals’ perspective.

Joan Gordon, LCSW

Ruby Barrios
Consumer

A consumer's relationship with their feeding tube can have a significant impact on their overall experience and quality of life at home on nutrition support. From a clinicians perspective, it can impact adherence and impact overall nutrition status and outcomes. Common problematic tube and tube site issues are avoidable and treatable at home which can empower consumers and the clinicians that support them to take an active role in straightforward solutions.

Cynthia Reddick, RD, CNSC

Remaining well hydrated is one of the biggest challenges for consumers with intestinal failure. Teaching consumers how to accurately assess their hydration status and intervene appropriately prevents emergency rooms visits and positively affects quality of life.

Maria Karimbakas, RD, CNSC

Presented by Takeda

Join us for a discussion featuring perspectives from a Pediatric Gastroenterologist, a Patient, and a Caregiver on the key milestones a patient with short bowel syndrome (SBS) may experience from diagnosis to adulthood.

Sivan Kinberg, MD, MS, MA

Swapna Kakani, MPH

Marie L. Neumann, MA

Confidence and competence are needed to discern the difference between routine, urgent and emergent situations for home enteral nutrition (HEN) consumers. This engaging discussion with leaders in HEN will empower patients and caregivers to have realistic expectations of what they can expect in the home from care providers and DME’s and develop skills to use their voice in creating a nutrition care plan that works for them.

Carol Ireton-Jones PhD, RDN, CNSC

Beth Lyman, MSN, RN, FASPEN, FAAN

Bathing or showering should be daily tasks for hygiene and quality of life. However, some patients with a Central Venous Catheter(CVC) struggle with showering or bathing.

Mary Gallotto, RN, MSN, CPN

Presented by Zealand

Quality of Life and additional patient experiences are important measurements to consider in clinical trials. Neglecting to assess individual response eliminates key information when evaluating the overall impact and outcomes of the study treatment. The presentation will increase awareness of Quality of Life outcomes in clinical trials, describe the role of exit interviews, provide information from the EASE-1 patient exit interviews and encourage trial participation to help move forward this essential trial measurement.

David Mercer, MD, PhD, FRSCS, FACS

Body image and acceptance is an important discussion within our culture. So why is it not widely discussed in the nutrition support community? And can that be harmful? This session aims to discuss the body image concerns individuals with nutrition support may experience, brainstorm and explore ways to help promote acceptance throughout different developmental stages, and share resources that aim to address and navigate these challenges.

Ashley Roberge-Boire, MSW, LICSW

Advocacy comes in many forms and is an important topic to continually discuss with the nutrition support community. There are new patients and families joining our community every day who may struggle with speaking up with their healthcare team and confidence asking questions. Our voices, goals of care, and quality of life matter. The objective of this session is to help empower consumers and caregivers with self-advocacy skills.

Kristy Poindexter, Patient Advocate/TPN Consumer of 35 years

Presented by Cardinal Health

Attendees for this session will have an opportunity to hear from experienced clinicians on how enterally fed patients can reach and maintain a high quality of life by monitoring their fluid intake and building an individualized nutrition care.

Carol Ireton-Jones PhD, RDN, CNSC

Beth Lyman, MSN, RN, FASPEN, FAAN