Conference Agenda

Help us give back to the Madison community by participating in a special Oley community service project. Together, we'll create no-sew blankets and write messages that reflect the hope, connection, and strength of the Oley community. These Knots & Notes will be delivered to the children and families of the Madison Ronald McDonald House.

Every day, members of the Oley community encounter moments where someone asks a simple question: “What is Oley?” Sometimes those conversations happen in hospitals, infusion clinics, support groups, doctor’s offices, online communities, or even in line at the grocery store. Often, we only have a few moments to explain who we are and why Oley matters.

This interactive workshop will help attendees learn how to confidently and comfortably talk about The Oley Foundation in a clear, meaningful, and authentic way. Together, participants will explore real-life opportunities for spreading awareness, discuss how to connect with others in the nutrition support community, and work in small groups to create a personal 30–60 second “elevator pitch” about Oley that they can use long after conference ends.

Whether you are new to Oley or have been part of the community for years, this session will help you become a stronger advocate, connector, and voice for the nutrition support community.

Step right up and join us Under the Big Top for an unforgettable Welcome Reception! Kick off the conference with an evening full of energy, connection, and a touch of circus magic. Come dressed to impress in your own circus-inspired costume and be part of the fun as we gather, connect, and set the stage for an incredible conference experience.

Of all the feelings we navigate alongside nutritional support, hope is one that sticks around. So say the hundreds of people and families Melanie Dimmitt has interviewed as editor of The Blend, the world’s only lifestyle magazine in the enteral and parenteral feeding space. And so she has discovered herself, by way of her very charming, solely tube-fed son. In this talk, Melanie shares what she’s learned about hope from people and families who are living full lives with feeding tubes and TPN. Through their stories, she reveals how hope strengthens communities, drives creativity and thrives in uncertainty. And why it’s one constant we can count on.

Before there was a conference, there was a community. This session brings Oley back to its roots of community, connection, and the shared understanding that no one walks this journey alone.

Join Oley's first employee as she shares the people, defining moments, and memories that shaped more than 40 years of the Foundation. Together, we'll look back at where Oley began, hear the stories that never made it into timelines or annual reports, and explore how the spirit that built Oley continues to inspire what’s next.

Along the way, you'll discover that Oley's story is still being written, by all of us.

The future of nutrition support is not something that happens to us. It is something we build together.

In this session, Oley’s CEO and Board representatives will introduce the 2026–2030 strategic priorities across community, research and innovation, education, and advocacy. These priorities reflect a clear commitment: the gaps people experience today, from discharge to long-term living, are not inevitable. They can be addressed through focused, coordinated action.

You will hear how these priorities connect to real needs. What it takes to ensure people feel supported from the start. How education can prepare individuals and families at every stage. How research can reflect what truly matters to patients. And how advocacy can drive safer systems, better access, and meaningful policy change.

This is not a plan to observe. It is one to participate in. Every person in the room has a role to play. We will close with a simple commitment: what is one thing you will put in your hands this year to help move this forward?

This patient focused session, hosted by Ironwood Pharmaceuticals, will explore how the lived experiences of people affected by serious, rare GI disorders can help shape better research and better care. Moderated by a community advocate, the discussion will consider how clinical studies need to be designed with participants, not just for them, to improve design and access and to advance meaningful improvements in care. They will share personal insights, raise common questions from the community, and reflect on realities and decision-making for participants and their families. Dr. Mohammed Jafri will explain why early, personalized conversations about clinical studies can be an important part of care planning, using latest research in Short Bowel Syndrome as an example. A clinical trial nurse or dietitian will offer practical guidance on what participation really involves, including day to day considerations, emotional support, and ways in which clinical teams try to address logistical challenges. They will also consider personalized approaches to improve equitable access to research. Together, the panel will highlight the vital role of patients and families as research partners, share strategies to support successful participation, and point attendees to trusted resources for learning more about clinical studies.

I want to share how fashion and clothing can be powerful tools for patients and the chronic illness community, influencing how others see and treat us and how we see ourselves. I'll highlight two ways I've personally used fashion to reclaim power and control the narrative around my illness. Additionally, I want to help the listeners identify how they want to present themselves in different settings to have the best chance at success.

Take a pause and join us for Mindfulness Moments, a calming session designed to help you relax your mind, recharge your energy, and reconnect with yourself.

Through guided breathing, gentle mindfulness exercises, and quiet reflection, this session offers a space to step away from the noise and focus on the present moment. Whether you’re new to mindfulness or have practiced before, this experience is designed to meet you where you are.

By the end of the session, you’ll leave feeling more centered, refreshed, and at ease ready to take on the rest of the Oley annual conference with a clearer mind.

What to Expect:
Guided breathing exercises
Mindfulness and grounding techniques
A peaceful, supportive environment

What to Bring:
Any personal items for comfort

Let's get creative! Find new ways to enjoy in life on EN and PN. We will cover different ways to create art from supplies and social supports you can establish for those days you need that extra push to set everything up. There will also be a hands-on portion were everyone will be encouraged to bring their supply packaging that would have otherwise been tossed. We will use that to create art, some can make a paper chain others, the more ambitious will be taken through the steps to make an origami heart. Going from infusing hope, to folding hope.

Join us for a welcoming and inclusive Oley annual conference Yoga session designed for all experience levels. This gentle, adaptive class focuses on simple movements and breathing exercises that can be done seated or with support, making it accessible for everyone, including those on nutrition support.

This session is designed to help you slow down, clear your mind, and let go of the stress of the day. By the end, you’ll leave feeling more relaxed, refreshed, and recharged.

What to Expect:
Low-impact, guided movements
Breathing and relaxation techniques
A supportive, judgment-free space

What to Bring:
Comfortable clothing
Any personal supplies or items needed for your care

Please Note:
This is not a medical service. Participate at your own pace and listen to your body. Caregivers and family are welcome to join.

This educational session will introduce clinical trial data and supplemental real-world evidence of a treatment option for SBS. The interactive presentation will include polling from the audience and share the efficacy and safety profile of an FDA-approved treatment option to help patients and caregivers make informed decisions that lead to individualized care.

This session is open to all attendees. Registration is requested for those participating in the sponsored breakfast, served from 7:00–7:30 AM. Breakfast participants are expected to remain for the educational session, which begins at 7:30 AM and is open to all attendees. Register for breakfast here.

Physical intimacy is a topic that is often hard for many to discuss, add a chronic illness and devices implanted in the body and it becomes that much harder. Two patients one male and one female on nutrition support (NS) with a nurse practitioner will discuss: How being on NS has impacted their physical relationships and discussing the mental health needs. This will be an open, candid discussion with the 3 on how to help improve the mental health, have an open conversation with your care team and your partner on meeting basic human needs of physical intimacy.

Understanding the nutrition blueprint is essential for building confidence and maintaining control over health during home parenteral nutrition (HPN). This session will explain the fundamentals of energy, protein, and lipids—what they are, why they matter, and how they are delivered through HPN therapy. The discussion will also highlight the importance of clear communication and shared decision-making in fostering effective collaboration with the care team to personalize the nutrition plan.

This presentation addresses the challenge new and experienced enteral tube feeders face in selecting the best feeding tube for their needs. While tube selection is often said to be driven by patient choice, how can patients or caregivers make informed decisions about what they don't yet know? This session will share a simple checklist and key questions designed to educate patients and caregivers on what to ask their care team, facilitating a collaborative discussion about the most suitable feeding tube options. It will explore how patients and caregivers can confidently lead conversations to identify the feeding tube that best fits

A pediatric surgeon and researcher, along with parents of children with intestinal failure, will share how supportive relationships between clinicians and families can shape research that truly meets patient needs. Dr Puder will give an update on current research in his Lab, from alternative lipid emulsions to improving CLABSI rule out protocols and more. Families will describe how they support this work and what is bringing them hope for the future. Attendees will discuss how patients and families/caregivers can work with clinicians and researchers to advance treatments, improve quality of life, and bring hope for bright futures.

This session will review how the National Home Infusion Association (NHIA) works to improve the quality, safety, and accessibility of home infusion care. Attendees will learn how NHIA supports the clinicians who deliver their care by providing education and training, including guidance on sterile compounding best practices to help ensure the safety and quality of the medications patients rely on. We’ll also highlight NHIA’s advocacy efforts to support policies that expand access to home infusion services, helping more patients receive the care they need in the comfort of their homes. Attendees will leave with a better understanding of the behind-the-scenes work that helps make home infusion care safer, more effective, and more accessible.

ASPEN representatives, Kathy Gura, ASPEN's immediate Past President, and Kelly Kinnare, ASPEN staff Director, will discuss how ASPEN supports patient safety by educating clinicians who care for those receiving nutrition support. They will take you on a behind-the-scenes safety journey to understand the steps in the process where safety is critical.

With limited face-to-face time with your prescribing team, this session with a gastroenterologist, dietitian and caregiver, all with expert experience in SBS management and long-term PN, will prepare you for your next appointment(s) to keep your care moving in a forward direction and assist you in meeting your individual goals. Patients will walk away with practical tips that can be incorporated immediately. Case-based learning will be utilized.

Artificial intelligence (AI) tools such as ChatGPT are new, rapidly evolving, and now widely available to the public. Many consumers of Home Parenteral Nutrition (HPN) are already using these tools to look for information, emotional support, and help with everyday questions. What exactly is AI? What role might these tools play in supporting daily life with HPN, and where is caution needed? This 1-hour session led by a researcher, clinician, and consumer is designed to help patients, caregivers, and clinicians better understand how AI can be used safely and responsibly as a support tool, while recognizing its limits. The session will begin with a researcher presenting findings from a recently published study comparing answers from ChatGPT with those from experienced HPN clinicians. In the study, 20 common HPN-related questions were evaluated by HPN providers. ChatGPT responses were often rated as accurate, appropriate, and empathetic, particularly for topics related to daily living with HPN, best practices, lifestyle challenges, and stress management. Clinician responses were rated higher for complex medical topics, including lab interpretation and clinical decision-making. These findings help clarify where AI may be helpful and where expert guidance remains essential. An HPN clinician will then discuss strengths and limitations of AI tools in patient decision-making, followed by an HPN consumer sharing lived experience using AI. The final portion of the session will be dedicated to open discussion. At the end of this session, attendees can expect to have a clearer understanding of what AI is, how tools like ChatGPT work, and practical ways to use them safely and responsibly as part of HPN care.

Speakers will participate in a roundtable discussion about how weight stigma can make it challenging to access nutrition support. The discussion will include topics like the BMI scale's impact on receiving care, clinical indications for nutrition support, and other challenges that people in larger bodies experience. We will draw on lived experience and clinical knowledge to educate and empower consumers and clinicians to understand how to navigate weight stigma in nutrition support.

Celebrate outstanding achievements with our patient and caregiver awards, including the Joan Bishop Lifetime Achievement Award. Also, please join us in showing appreciation to our Corporate Partners and Conference Sponsors.

Relationships don’t come with a guidebook, especially when navigating chronic illness.

This set of roundtables explores connection across every stage of life—from childhood friendships and sibling dynamics to partnerships, caregiving, and support systems.

Through honest conversations and shared experiences, you’ll gain practical tools and perspectives to help you build stronger, more understanding relationships.

Here's a preview of our Self-Advocacy sessions. From speaking up in complex care to influencing policy and building confidence in your own story, these sessions offer practical tools and real-world strategies to help you feel heard, informed, and empowered.

A discussion focused on practical strategies for daily life on PN alongside emerging research and approaches to improve long term health and quality of life.

This session is open to all attendees. Registration is requested for those participating in the sponsored breakfast, served from 7:00–7:30 AM. Breakfast participants are expected to remain for the educational session, which begins at 7:30 AM and is open to all attendees. Register for breakfast here.

Adherence to nutrition support is not just about clinical parameters, safety, and compliance — it’s about partnership. When patients feel heard and clinicians consider real-life goals like travel, work, QoL, and relationships, outcomes improve and “rogue” behavior decreases. This session explores how to shift from an adversarial mindset to true collaboration, recognize early signs of non-adherence, address challenges, and design care plans that protect safety while supporting quality of life.

The news is full of stories about health care worker burnout, but what about caregivers? For every person living with a chronic illness, there are countless family members whose lives are also altered, creating stress that can lead to exhaustion and burnout. Learn about the factors that contribute to burnout and how it can negatively affect your ability to support your loved one through their care journey. Understand how to recognize the symptoms and explore resources and tips for self-care so you can stay inspired, go the distance, and be present for the nutrition support consumer.

Join this intimate round table hosted by enteral device manufacturers to learn a single best practice at each station. In a small setting, clinicians and product managers will present focused, 5-minute sessions on topics like caring for your balloon feeding tube or preparing your feeding set for backpack use. Engage in interactive discussions, demonstrations, and Q&A, gaining practical tips to optimize the use and maintenance of your enteral device. Take home helpful printed and QR code educational materials. We hope this session sparks additional discussion and learning when you visit the expo hall, empowering you to enhance your healthcare journey.

This session provides a practical, up-to-date overview of advancements in Home Parenteral Nutrition (HPN) for experienced clinicians and long-term patients. We'll explore recent changes in clinical protocols, new formulations and technologies, and evolving best practices in patient support and safety. Key topics include: -New lipid formulations and compounding practices -Infusion pump and catheter technology updates -Revised infection prevention strategies -Remote monitoring and telehealth integration -Patient-reported outcomes and quality of life focus -Policy, reimbursement, and homecare delivery trends Attendees will leave with actionable insights to enhance safety, efficiency, and patient experience in HPN care whether delivering it or living with it.

The internet, social media, and news put nutrition information right at our fingertips every day. How do we know what information is reliable and accurate when sifting through all of this? We'll discuss ways to look at nutrition information from a critical perspective to figure out what's fact and what's fiction.

Across the country, access to home enteral and parenteral nutrition is becoming increasingly fragile. In some regions, providers can no longer sustainably deliver care, discharge processes remain inconsistent, and patients face growing barriers to safe transition home. Reimbursement misalignment, lack of standardized discharge expectations, and unclear accountability continue to strain the system.

This industry summit is designed to move beyond identifying problems and toward actionable solutions. Through focused discussion and breakout work, participants will identify priority barriers, review real-world examples, and develop clear stakeholder “asks” for payors, health systems, providers, manufacturers, policymakers, and patient organizations.

The session will focus on practical opportunities to improve access, strengthen discharge readiness and education, and support sustainable care delivery models. The goal is to leave with prioritized actions and aligned next steps that can begin advancing progress immediately after the meeting.

If access to care is not financially viable, it cannot be assumed. This session is about defining what happens next.

This roundtable explores the challenges and strategies for living on parenteral nutrition (PN) during major life transitions. Participants will discuss how PN impacts school, college, work, independent living, relationships, and recreational goals, including sports and travel. The session will provide practical tips for managing PN routines, maintaining independence, and balancing health needs with personal ambitions. Attendees will share experiences, learn approaches for communicating PN needs with peers, educators, employers, and family, and build supportive networks. The discussion emphasizes practical solutions, emotional well-being, and fostering quality of life, helping participants navigate life's milestones while staying healthy, active, and connected.

Living with a feeding tube long-term can bring unexpected challenges like skin irritation, discomfort, or changes in digestion. This session will explore common issues that can arise over time, how to recognize them early, and what steps can be taken to feel better and stay healthy. The ability to adapt and recover from challenges of long-term complications can feel overwhelming. This session will offer practical tips for patients and caregivers alike.

Learn when an intestinal transplant might be an appropriate option for you or your child, when using part of the bowel that someone donates when they are living is an option, and what you can expect to occur after a transplant.

In this workshop we will review basic advance directive for health care terminology. We will work through the common sections of an advance directive form. You will be prepared to complete your own state-specific Advance Directive for Health Care.

Feeding intolerance can cause discomfort, bloating, nausea, or problems with feeding tube devices for those using feeding tubes. This session helps patients and caregivers recognize the signs early and understand what might be causing them. Simple strategies to improve tolerance and working with healthcare teams to feel better will be key topics. With practical tips and supportive guidance, this talk empowers families to take an active role in managing feeding challenges.

This session explores current knowledge "and the gaps" on how Home Enteral and Parenteral Nutrition affect quality of life.

This presentation will focus on two perspectives at once: the professional perspective of a registered dietitian who is an enteral nutrition consumer and sees patients on HEN every day, as well as the personal experience from a HEN consumer/caregiver themselves. The RD will discuss the barriers to appropriate patient care, including a lack of knowledge, support, and resources, while relating it to personal experience, and will finalize the first portion by listing possible solutions to provider-patient barriers that exist. The second portion will focus on the guest speaker, who will give their perspective as a tube feeding consumer/caregiver and provide their own view on these barriers, challenges, and possible solutions. The presentation will summarize possible outcomes to improve the experience of patients and caregivers as a provider/patient.

Living with chronic disease includes health triumphs and setbacks in a continuum from rare disease diagnosis to intestinal rehab to intestinal transplant. This journey requires evaluation of symptoms, care plan goal setting and treatment decisions. This process is riddled with new information to synthesize and difficult decisions that may cause anxiety. This panel discussion will review methods to navigate, communicate and advocate for a high level of care from both the patient and the clinician perspectives. This session will provide tools and experiences to help facilitate empowered decision making.