We are pleased to announce our 2025 Keynote Session by Tripp Hays and Trinity Lowthian. Their speech will be two ways of looking at dualities of life. You are not going to want to miss this unforgettable way to kick off Oley 2025.

Transitions of care settings for individuals on long-term nutrition support are complex—and when miscommunication and lack of coordination occur, the consequences can be serious. But improving these transitions isn’t just one person’s job—it’s a shared responsibility.

This session introduces the GROW framework, a structured approach that helps patients, caregivers, and healthcare professionals work together for smoother, safer transitions. Through real-world case studies, expert insights, and interactive discussions, we’ll explore the four key pillars of GROW:

Gaps – Identifying breakdowns in care transitions

Readiness – Ensuring patients and teams are prepared

Ownership – Clarifying responsibilities across all roles

Workable Solutions – Applying best practices for better outcomes

Every person involved in the transition—from hospital teams to home care providers, patients, and caregivers—has a vital role to play. By emphasizing shared responsibility and defining clear roles, we can improve care coordination, reduce setbacks, and enhance patient outcomes. Join us and walk away with practical, actionable strategies to make transitions smoother for everyone.

Individuals who rely on nutrition support have unique physical and mental health needs that can impact their quality of life (QoL) and mental well-being. This interactive session will share findings from a new research initiative driven by patients, caregivers, and community leaders of the intestinal failure community, as a way for fellow pediatric and adult patients and their caregivers to share their voices through data. We will highlight the perspectives of caregivers, children, teens, and adult patients receiving nutrition support and present critical insights from four years of research on their reported QoL and mental health needs. The session will conclude with an interactive segment to provide practical takeaways for audience members: a licensed mental health provider will offer hands-on, evidence-based strategies to support well-being and coping among patients and their families.

Are you curious about the enteral devices that play a crucial role in your healthcare? Join us for an engaging and informative session where we bring together medical device manufacturers and patients to explore the best practice of your enteral devices.

We believe that knowledge is power, and by empowering patients with information about their enteral devices, we can enhance their overall healthcare experience. Through interactive presentations, demonstrations, and Q&A sessions, you'll learn about the features and benefits with enteral devices.

We are excited to announce that the session will include tables hosted by clinicians or product managers from the manufacturer, focusing on a specific topic at each table related to the enteral device. Each table will feature a 5-minute presentation on a single topic, such as how to care for your balloon feeding tube and how to prepare your feeding set for backpack use. This will provide you with practical tips and guidance on how to effectively use and maintain your enteral device.   Each table will also provide written education material printed or in QR code to take home with you.

Whether you're a patient or caregiver, this session is designed to provide you with valuable insights and foster a sense of empowerment. Don't miss this chance to take control of your healthcare journey as curiosity and knowledge is power.

What is a Special Needs Trust? What is an ABLE account? What is the difference?

Come hear about special needs trust that you can create for yourself or a loved one who may need public benefits to pay for care. Learn about ABLE accounts that patients can manage for their own Qualified Disability Expenses. 

This educational and interactive session will introduce Real-world Evidence as a complement to clinical trial data and explore a treatment for SBS-IF in clinical practice & outside controlled clinical trials. The presentation will explain what to expect for efficacy and safety from a treatment option and help patients and caregivers make informed decisions that lead to individualized care.

What do you know about intestinal rehab and transplant? Once you know about the exciting care options and research, how do you integrate the information into your deliberate life? With no one size fits all solution, facing this type of decision is complex and personal. In fast-paced sessions led by patients, with practitioners, we seek to lift the curtain on when to transplant and when to rehab.

As a pediatric resident physician, through the early years of my training I have been struck by the level of care our families of children with complex illnesses take on after being discharged home. 

I was most surprised by the lack of support structures in place for our families once they are discharged, for all of our patients who go home on IV nutrition and enteral feedings, but even more so for those who may not primarily speak English in the home. Our children with intestinal failure have high medical needs and parents take intense measures to prevent infection, manage nutrition, coordinate appointments amongst other household responsibilities. 

I conducted a community-based research project to learn from our families themselves, asking for their perspectives: what types of information families are seeking most? how might resources & community support might be better obtained and utilized in the community? 

By gaining perspectives first from the community, we can better advocate for one another and improve support efforts for everyone involved in our children’s care. Let’s all prime each other to grow better than ever!

Chyme reinfusion therapy (CRT) is recommended for intestinal failure (IF) patients with high output stomas. An innovative, easy-to-use system has been developed that facilitates self-management of CRT at home. Speakers will review indications, clinical outcomes from nutritional management studies. New CRT technologies will be demonstrated, with practical tips for successful chyme refeeding.

Most consumers of enteral nutrition administer medications through their feeding tubes.  This can be done in ways that promote patient safety and accurate delivery.  Unfortunately, there is often a knowledge gap about the best practices for enteral medication administration. Consumers are often unaware of products that can make their lives easier and their medication administration practices safer.

Join us for an enlightening presentation, "From Prescription to Pump: A Patient-Centered Journey Through Parenteral Nutrition Therapy." We will delve into the comprehensive Parenteral Nutrition (PN) use process, from initial clinician consultation through patient assessment, prescription development, order review and compounding, to administration and monitoring to optimize outcomes and benefit quality of life. We will also explore best practices that emphasize the space between PN consumers/caregivers and clinicians, addressing challenges in communication and collaboration. These best practices include a patient-centered approach, clear communication, standardized practices, continuing education, and feedback strategies. By understanding the PN use process and adopting these best practices, we can empower a collaborative environment, ensuring optimal PN care for all involved. Join us to learn how to improve the PN journey for patients and clinicians alike, focusing on the patient's unique needs and experiences.

This study explored the experiences of caregivers of children with IF through a scoping literature review and a cross-sectional national survey with quantitative and qualitative analysis. Focusing on the caregiving experience through learning about what has been published, how confident caregivers feel providing central venous catheter (CVC) care, how many informal and formal supports they have, how this care impacts their ability to manage the condition and its impact on the family, and lastly open-ended questions in which caregivers reflected on their experiences caring for children with IF.

Lived experience can lead to products and solutions that can change lives. My talk will go through the process of identifying a problem, developing a solution, finding partners in industry, and where companies can do better in partnering with patients. This talk is for patients who want to create and for companies to learn how to include us in meaningful ways.

Adolescent and young adult (AYA) patients who rely on nutrition support experience a unique set of challenges related to their medical treatment. Some examples are body image, sexuality, social isolation, mental health, identity development, clinical trial access, financial needs, education, treatment non-compliance, and fertility care. At this time, AYA patients and their families are treated in either pediatric or adult settings, neither of which are developmentally appropriate. AYA patients are radically different than older or younger generations so we should not be treating them like other patient populations are treated. However, healthcare professionals are not even required to have previous education on how to treat AYA patients like they do in neonatal, pediatric or geriatric specialities. By continuing to treat AYA patients this way it damages patient-provider relationships, decreases the likelihood of treatment compliance, limits patient access to clinical trials, affects patient mental health, may lead to mismanagement of patient's medical treatment, and reduces survival rates.

For AYA patients who have been treated in pediatric facilities for much of their lives this stage of life between childhood and adulthood can be a scary experience. They are having to worry about switching from their familiar pediatric healthcare team to an adult healthcare system that is not built for them, which often leads to mismanagement of their medical treatment from new adult providers. In children's hospital settings AYA patients are very rarely involved in decision making about their own care and this is not because theydo not want to be invlolved but because they are not being provided with the tools and education on how to to effectively advocate for themselves. Autonomy over one's healthcare decisions and self-management of medical treatment is important in helping these patient's to become high functioning adults.

To improve all of these issues we must use a targeted biopsychosocial approach. This must include early intervention strategies like teaching patient's effective coping and self-advocacy skills, training hospital staff, and practicing proper communication practices is crucial in ensuring apositive psychosocial outlook for AYA patients regarding their medical diagnosis and treatment.

Some examples of intervention strategies:

1. Provide AYA patients with better access to mental health services along side services for their chronic condition.

2. Schedule patient treatments and appointments around the patient's schedule or important life events. If an AYA patient enjoys sleeping in which causes them to miss early morning appointments try to make an effort to schedule their treatments or appointments in the afternoon.

3. Set patients up to be independent in making treatment decisions this means involving them in age-appropriate conversations about their care when they are young.

4. The creation of digitial health interventions of the AYA population to keep them engaged in medication adherence.

5. Create adolescent and young adult only spaces and waiting rooms within hospital settings.

During this panel session, participants will gain a comprehensive understanding of tube feeding intolerance, including its causes, symptoms, and potential complications. The panelists will shed light on the importance of early identification and accurate diagnosis, emphasizing the role of patients in recognizing and communicating their symptoms to their healthcare team.

Life often presents us with uncontrollable obstacles, particularly in the realm of health and wellness. In this engaging session, I will share my journey as a 2x intestinal transplant recipient, short gut syndrome patient,  patient advocate, actress, musician, and CEO of Miracle Work Ministries. Together, we will explore the transformative power of pivoting—surrendering control and embracing new directions.

Who says you can only run your infusions at night? Join us for an engaging discussion on optimizing the timing of home enteral and parenteral nutrition infusions to enhance sleep quality and daily activities. Featuring a diverse panel of consumers and experts, we’ll explore effective strategies and personalized recommendations that can transform daily routines. This session may be useful for improving quality of life and empowering consumers to take control of their nutrition health and overall freedom.

When the consumer and care team work together and use a wider array of testing this can truly make the PN personalized for the consumers complex needs. Really understanding what is in your PN. Then taking a deeper look into some of the additional testing that consumers and the care team should consider to meet the needs of the consumers. Some of these tests are animo acid profiles urine and plasma, vitamins profiles, and even to a DEXA scan for example, how these tests are used and what they tell the health team and consumers.  How working together to improve the health and help prevent potential future completions.  Really looking into how the body utilizes different amino acids and vitamins. What is commercially available and currently on the market to make the best choice for the consumer. 

Using these tests to improve the balance in the consumers body to improve her overall health and nutrition.  Looking at both preventing potential damage to organs given the individual’s complex medical issues and giving her the best quality of life. This presentation will be given by a member of the care team and the consumer and how they worked together with the data.

This session focuses on the role of nutrition in helping to manage Short Bowel Syndrome (SBS) and prevent complications, while exploring factors such as stigma, cultural preferences, cost/insurance barriers, adapting psychologically to new regimens and feeding/restrictive eating difficulties.

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

Patients on home nutrition support rely on an intricate web of healthcare providers, caregivers, and industry professionals to ensure they receive safe, effective, and sustainable care. However, communication gaps, reimbursement challenges, and system inefficiencies often leave this vulnerable population struggling to access the support they need.
This panel discussion brings together diverse voices from across the continuum of care—including a caregiver, a physician, a representative from The Academy, and a representative from NHIA—to explore the critical touchpoints in patient care transitions. We’ll examine how advocacy, interdisciplinary collaboration, and policy changes can impact access to home infusion services, address systemic challenges, and improve patient outcomes.

When a rare brain tumor changed his son Noah’s life overnight, one father found himself navigating the unfamiliar and often overwhelming world of enteral nutrition. From selecting formulas to managing feeding schedules, troubleshooting equipment, and balancing medical needs with quality of life, he quickly realized that the tools and technology available to families and clinicians were often outdated, unreliable, and not designed with the realities of daily life in mind.

This session shares the authentic, personal story of a parent-turned-innovator, who spent five years developing a better way for everyone navigating enteral nutrition. Through photos, personal anecdotes, and honest reflections, this talk highlights the emotional toll of caregiving, the challenges of enteral nutrition management, and the critical need for innovation that centers the experiences of both patients and care partners.

Join me, Elena Stoyanova, MSN, RN, at the 2025 Oley Foundation Conference for "Central Line Complications Uncovered: From Routine to Emergent." I’ll help you identify and categorize complications while providing actionable strategies and practical resources. This session is for everyone—empower yourself with the knowledge to take charge of your health journey!

Choline is essential for maintaining overall health, yet many patients receiving TPN may experience choline deficiency, leading to issues like fatty liver disease, muscle weakness, and mental fog. Without enough choline, critical day-to-day functions can suffer. By restoring choline levels through an FDA-approved IV formulation of choline, patients can experience enhanced overall health and quality of life. 

All members of industry welcome. All others by invitation only.

This presentation will go over the current state of healthcare culture from the clinician perspective, new technologies in vascular access, and strategies to advocate for your care. I’ll be saying the quiet part out loud.

 Many in our community access feeding therapy or feeding support for a variety of reasons…eating often can be a trigger for a patient on nutrition support therapies. What makes success in eating and therapy?  Is it the fundamentals of learning how to chew and swallow safely?  Is it to increase volume or sensory accommodation? Or maybe eating was never the goal. Once you master your goals…how does that translate to real life success?  What does your relationship with eating and food look like for you?  What changes did you have to make to increase your quality of life? Come and listen to real life experiences from patients with varying GI disorders. Every speaker is unique from caregivers to teen patients to adult patients some with central lines and feeding tubes and some without. They all share a different perspective and want to share their story and provide tips and tricks on how to navigate your relationship with food & how to manage social gatherings around food & lastly share what helped increase their quality of life.  

PNALD (also called IFALD, or intestinal failure-associated liver disease) occurs in children and in adults on prolonged parenteral nutrition (PN), especially home PN. Its cause is not clear, but excessive calories and/or excessive intravenous lipid administration have been implicated. Recently, the availability of fish oil lipid emulsions promises to help reverse PNALD in affected patients.

This session provides an introduction to intestinal rehabilitation, combining clinical insights with patient perspectives. Through an interactive discussion with a patient expert, dietitian, and physician, attendees will explore gut anatomy, intestinal function, and management. The focus will be on personalized care and patient-led decisions within a multidisciplinary team approach.

Many patients live with tube-feeding intolerance, assuming discomfort is just 'part of the process.' But persistent symptoms like bloating, cramps, or nutrient loss may actually signal fat malabsorption—a treatable condition. This session will empower patients and caregivers to recognize the signs and seek targeted treatments to enhance comfort, quality of life, and health outcomes.

Home Parenteral & Enteral (HPEN) consumers are interested in recycling and sustainability. Creatives have repurposed packaging and supplies into works of art and wearables.  Infusion packaging and supplies are voluminous and likely recyclable. The World Health Organization has published a comprehensive guide to regarding non-hazardous healthcare waste, in its 2nd edition. This presentation will explore current practices and present educational resources for infusion companies and consumers.