LifelineLetter, Winter 2024 by OleyFoundation

Sarah Ellis shares how Oley has been a lifeline for her family, providing support and community over the course of their TPN-IV nutrition journey.

Discover our new resource that aims to facilitate collaboration between patients and healthcare providers, to ensure central line decisions reflect both clinical expertise and the lived experiences of those affected.

Power in Persistence

Katie Marschilok shares her seven-year long journey of battling chronic intestinal failure, proving the power of persistence, self-advocacy, and hope in overcoming severe health challenges.

Letter

Chief Executive Officer: Beth Gore, PhD

Director of Marketing & Communications: Alaina McCormick

Director of Corporate Engagement: Tracey Giambertone, MS, RDN, LDN, CNSC

Manager of Education & Innovation: Maisy Cyr, MSW

Manager of National Advocacy: Andrea Taylor, RD, CNSC

Operations Manager: Cathy Harrington

Human Relations Manager: Maria Castrodad

Digital Marketing Coordinator: Fiorella Perlloni Youth Program Coordinator: Jade Lusk

Board of Directors: David Mercer, MD, PhD, FRSCS, FACS, President ; Lisa Epp, RDS, CNSC, LD, President Elect ; Steve Atkinson, Treasurer ; John Mahalchak, Secretary ; Luccas Borges; Sarah Ellis; Roy George; Shirley Huang, MD; Sivan Kinberg, MD, MS, MA; Vanessa Kumpf, PharmD, BCNSP, FASPEN

Science & Medicine Advisor: Manpreet Mundi, MD, FASPEN

Our Mission: To enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation.

The Oley Foundation provides its 29,000+ members with critical information on topics such as medical advances, research, and health insurance. The foundation is also a source of support, helping consumers on home IV nutrition and tube feeding overcome challenges, such as their inability to eat and altered body image.

All Oley programs are offered free of charge to consumers and their families.

Our Vision: Oley envisions a world where patients are united, supported and empowered to thrive on home nutition support.

How to Support Oley: Donations are tax deductible and are accepted at oley.org/donations or at the street address listed below. We appreciate your support.

Please note: Oley members share their stories for the benefit of others in similar circumstances. Please do not contact them for solicitation, marketing or research.

LifelineLetter Winter 2024 • Volume 45, No. 4

Phone: (518) 262-5079

Email: info@oley.org oley.org

Publisher:

Oley Foundation Albany Medical Center, MC-28 43 New Scotland Avenue Albany, NY 12208

Oley Voices

Lisa Crosby Metzger | Former LifelineLetter Editor & Director of Advocacy

Dear Oley readers,

By the time you read this, I will have retired as editor of the LifelineLetter. I have loved and enjoyed working at the Oley Foundation for nearly eighteen years. This job was a perfect fit for me, and checked so many boxes of interest, passion and skills. I have been so fortunate!

My first exposure to the Oley Foundation was in 1989, when I was pregnant with my second child and, for a second time, was dependent on home parenteral (IV) nutrition for several months. Dr. Lyn Howard, cofounder of the Oley Foundation, managed my care. I was uninsured then, yet she was incredibly supportive, provided wonderful care, and was very generous with her time and knowledge. When my husband and I could, we donated annually to the Oley Foundation.

Fast forward to the early 2000s, when I met Roslyn Dahl at a mutual friend’s house. Roz was then Oley’s communications and development director. She was amazed I knew about Oley! I was a freelance editor then, and Roz urged me to apply at Oley.

When I first started, I worked ten hours a week, focusing solely on the newsletter. That was a blessing—I had much to learn about Oley and the world of nutrition support. But as I became more involved and learned, my responsibilities and hours grew. I moved into advocacy in addition to editing the newsletter.

One of the biggest challenges I have faced in working for Oley has been balancing what I wish I could do and want to do for the organization and the Oley community with what I have had time to do. In the instances where I have successfully overcome this, it has been thanks to teamwork and relying on coworkers, colleagues, and others.

It is so frustrating when you can’t help affect change, provide help, or find a solution or answer—and so satisfying on those rare occasions when you can.

I’m grateful for the opportunities I’ve had to learn from Oley members—steadfast, dedicated, generous, empathetic, committed consumers, caregivers, and talented, compassionate clinicians and other professionals. I’m also grateful for the opportunities to talk to consumers and caregivers about their lives and needs and make many friends.

The Oley community has had a profound influence on my life. Individuals like Dr. Lyn Howard, Joan Bishop, and Beth Gore have inspired me with their compassion, dedication, and intelligence. Their ability to get to the heart of a matter has been a guiding light for me. I have also been inspired by my wonderful coworkers and colleagues, who have all been motivated by their love for and passion for serving the Oley community. Each of them has contributed to my personal growth and taught me valuable lessons.

As I bid farewell, I carry with me the lessons and experiences shared by Oley members. I am deeply grateful for the generosity, kindness, support, and patience that you have shown me and each other. I will miss you, but I am hopeful that our paths will cross again. I cannot imagine stepping away from this community entirely and look forward to future connections.

Fondly,

ON THE COVER : Gaby Luna facilitating a small group discussion on “Connecting Life’s Stages” from Oley 2024: Connected.

Oley Board & Staff Updates

We are pleased to announce that David Mercer, MD, PhD, FRSCS, FACS, will serve as Oley Foundation’s board president in 2025. Dr. Mercer has been a dedicated supporter of Oley for many years, contributing his expertise as a board member and serving as president-elect in 2024. We are equally excited to welcome Lisa Epp, RDN, CNSC, LD, as president-elect. Ms. Epp has been an invaluable member of Oley, with years of service on the board and in her most recent role as governance committee chair. We are excited to continue our mission with such passionate and experienced leadership.

Dear Dr. Tappenden,

David Mercer, MD, PhD, FRSCS, FACS

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.

Lisa Epp, RDN, CNSC, LD

Lisa Epp, RDN, CNSC, LD is an Advanced Practice dietitian at Mayo Clinic in Rochester, Minnesota, and Assistant Professor in Nutrition at Mayo College of Medicine and Science. She is a member of the American Society for Enteral and Parenteral Nutrition (ASPEN), and currently (2022) co-chairs ASPEN’s enteral committee. She enjoys speaking at meetings of state and national organizations, such as ASPEN’s Nutrition Science and Practice Conference, Academy of Nutrition and Dietetics Food and Nutrition Conference, and the Oley Foundation.

On behalf of The Oley Foundation and its Board of Directors, we want to express our heartfelt gratitude for your significant contributions to nutrition support and your dedication to our community. Your impact on patients and families relying on parenteral and enteral nutrition (PN/EN) is truly remarkable. Throughout your distinguished career, you have advanced our understanding of intestinal failure, adaptation, and effective nourishment for those with malabsorption. Your service as board president during Oley’s transition period was invaluable, providing continuity and guidance as I stepped into my role as executive director. We appreciate your patience and support during this time. As you continue to inspire as dean of the College of Health at the University of Utah, we hope your legacy within Oley grows. The connections you’ve fostered among research, education, and patient care have greatly impacted our community and the lives of many patients. Thank you for your leadership and passion for advancing nutrition support. You will always have a special place within the Oley family. With sincere gratitude,

Beth Gore, PhD

CEO, The Oley Foundation

On behalf of the Oley Board of Directors

Kelly Tappenden & Beth Gore

Oley Board Member Additions

Please join us in welcoming Oley’s newest board memebers, Luccas Borges and Sarah Ellis.

Luccas Borges

Luccas feels incredibly fortunate to be alive after a near-death skiing accident in December 2020. Due to a ruptured superior mesenteric artery (SMA), he lost all but six inches of his small intestine, with his duodenum now connected directly to his colon. He survived after his heart stopped for ten minutes and required over 150 units of blood. Luccas was in a coma for a week, underwent spinal fusion surgery to repair an L2 fracture, and has since relied on daily home parenteral nutrition (HPN).

Originally from Brazil, Luccas grew up moving frequently, living in places such as Malaysia, California, Florida, and Chicago. He graduated from Harvard in three years with a B.A. in Economics, magna cum laude, and later earned his MBA from the University of Chicago Booth School of Business. Luccas has experience in strategy consulting, private equity, and real estate investing. He is currently the co-founder and President/COO of Union Industrial Co., a private equity firm based in Dallas.

Sarah Ellis

Sarah is a social policy researcher focused on solutions to homelessness and the proud mom of Maisie, an energetic first grader who has been on TPN since birth due to short bowel syndrome. While Sarah spends her workdays immersed in randomized controlled trials and policy briefs, she likes to think she also specializes in navigating care teams, understanding Medicaid waivers, troubleshooting supply shortages, advocating for quality of life, fundraising for medical research, and building a strong network of medical moms, among many other roles. Sarah lives in Alexandria, Virginia, with her husband, Dwight, and their children, Maisie and August, where they enjoy exploring playgrounds, hiking trails, and local restaurants.

The Recipe Builder has been updated! Now with both adult and pediatric recipes to choose from! The Blenderized Tube Feeding Recipe Builder is your go-to source for customized tube-feeding recipes tailored to your family’s unique nutritional needs.

The Recipe Builder features:

New ingredients, including pomegranate juice, tahini, peanut butter powder and more!

Additional gluten-free ingredient options in your personalized online recipe book.

Enhanced allergen ﬁlters to help you create recipes tailored to your speciﬁc dietary needs and preferences.

Start blending at compleat.com/blend-from-scratch

The Blenderized Tube-Feeding Recipe Builder Making it Easy to Blend at Home

The Blenderized Tube Feeding Recipe Builder is powered by the Blenderized Diet Recipe Calculator. The Blenderized Diet Recipe Calculator was created by Robin Cook, MS, RD, LDN, and is reproduced under a license from Children’s Hospital of Philadelphia (CHOP). No

ABOUT LETTERS TO THE EDITOR:

The Oley Foundation welcomes letters to the editor. Please send them to info@oley.org. Letters should be concise, courteous, and original (not copies). They must be timely and include the writer’s name and place of residence (city, state). Letters may be edited for length, style, and tone at Oley’s discretion and without notice to the writer. Oley reserves the right to refuse to publish letters containing offensive or inappropriate material. Opinions expressed in letters are those of the writer and do not necessarily reflect the views of Oley. The Oley Foundation is not responsible for the content or factual accuracy of the information in the letters.

It’s Time for G-Tube Innovation

The data on the health benefits of real food over labcreated formula is overwhelmingly revealing on how much healthier real food is, with less digestive issues, less problems with constipation, diarrhea, gagging, reflux and overall intolerance. I have zero issues with tolerance on a blended real food diet. Yet we cannot get a low-profile button with an internal bore larger than 3.0mm (despite the French size), which severely restricts the ability for people to feed on home-blended foods. ENFit bores are even smaller, at 2.9mm.

Thankfully legacy “dangler” tubes are still available. I believe there are tens of thousands of Tubies who would switch to a low-profile button if the internal bores were proportionally larger as the French sizes increase. A 24 Fr legacy tube with a 4.6mm internal bore makes blended food feeding very manageable.

Manufacturers need to catch up to the reality that blended food tube feeding is the healthier route and start producing and selling low-profile buttons with larger internal bores. And if ENFit wants to own this market, they need to re-engineer their internal bore sizes and connectors to accommodate thicker viscosity food blends.

The first company that offers a button with a larger internal bore for blended foods will realize enormous sales as legacy Tubies convert to buttons. More importantly, this is an issue about the overall health of tube-fed people. With nearly 60 percent of Tubies feeding on blended foods, and more converting every year, the data is overwhelming that real food is superior to formula in securing the health of tube-fed people.

I encourage all who read this plea to contact the major manufacturers of enteral devices and request low-profile buttons, tubing, and connectors with proportionally larger internal bores as the French size increases to accommodate thicker real food blends. Our bodies were not designed to thrive on lab-created formula. It’s about everyone’s health and quality of life, so get active, write, call, make some noise, and demand the equipment we need for a better quality of life. It’s hard enough having to feed through a G-tube without the complications that arise from intolerance to canned formula.

—Mike C. Rolesville, NC

Note: The opinions expressed above are those of the author and do not reflect the views of The Oley Foundation. While we value diverse perspectives, submissions are shared without commentary. Always consult your healthcare provider before making any changes to your care plan.

Nominate Someone Who Inspires You: 2025 Oley Awards

The Oley Foundation celebrates the incredible resilience of those living on nutrition support through its annual HPEN Awards and the Joan Bishop Lifetime Achievement Award, honoring Joan Bishop’s 40 years of dedication to our community. This prestigious award recognizes individuals who have shown exceptional commitment to advancing home nutrition therapy. Nominate someone inspiring by March 21, 2025, at oley.org/nominations. Awards will be presented at the 2025 Oley Annual Conference in Charleston, SC, June 17-20. We encourage winners or their representatives to join us in person! For more details on criteria and applications, visit oley.org/nominations.

The Awards & Criteria

HPN Hero Award

Rising Star Award

Sponsorship Available

• Current HPEN consumer for one year or longer

• Under 18 years of age

• Shows a positive attitude in adapting to life on therapy which encourages and inspires others

Joan Bishop Lifetime Achievement Award

Winner to be chosen by the Oley Board of Directors

Nominee must:

• Have been involved with home nutrition support therapy for more than 10 years;

• Be an Oley Foundation member;

• Have consistently demonstrated admirable activities which advocate for themselves or others receiving enteral nutrition (tube feeding) or parenteral (IV) nutrition.

Note: It is recommended that the award winner or their representative should be able to attend the 2025 Oley conference to receive the award in person and be able to articulate their story at the award ceremony. There is no cash prize associated with this award.

HEN Hero Award

Caregiver Extraordinaire Award

Important HPEN Award Reminders

You must notify the person you nominate for the award. Self-nominations will not be accepted. Each nominating individual is limited to one (1) nomination. HPEN winners will receive $750* to offset the expenses of attending Oley’s 2025 Conference (*reimbursement after the conference with documentation submission). Please email us at info@oley.org or call the office at (518) 262-5079 with any questions or issues with your submission form.

Empowering Oley into the Future: Planned Giving, Endowment Fund & Other Donations

One of the most humbling aspects of our work is witnessing the incredible generosity of our Horizon Society members, who have chosen to leave a legacy through their estates. This generous act honors the memory of individuals who have touched our lives, but also significantly enhances our ability to serve and support our community.

When we receive funds from an estate, we are deeply moved by the thoughtfulness and foresight of those who have made this choice. It is a testament to the impact that Oley has had on their lives, and it inspires us to continue our work and allows us to advance our mission and fund vital programs.

In 2024, Oley became the recipient of several substantial bequests. The generous gift from Dr. Darlene Kelly, Oley’s Science and Medicine Advisor from 2012 to 2022, was directed toward the initiation of Oley’s first endowment fund. Oley also received generous bequests from the estates of Oley members Lucy Anne Karels and Nancy Goodick. We extend our gratitude to them, and to other donors who asked that their donations remain anonymous. We are determining the best use of these generous donations for the most tangible impact.

An Endowment Fund

An endowment fund is incredibly beneficial for our organization because it provides financial stability and security. While annual donations and other forms of giving are crucial for our day-to-day operations, an endowment is a gift for the future. It offers a reliable, ongoing source of income. This steady stream of funds allows us to plan for the long term, expand our programs, and weather economic uncertainties without compromising our ability to serve those who rely on us.

By contributing to Oley’s endowment fund, you are not just making a one-time donation—you are making a gift that keeps on giving. Your contribution will continue to support our work year after year, ensuring that we can continue to fulfill our mission for generations to come. It is a powerful way to make a difference that endures.

Every contribution is valued and cherished, whether publicly acknowledged or not. Your support helps us provide essential resources, support innovative projects, and promote the standards of care that our community deserves.

By contributing to Oley’s endowment fund, you are not just making a one-time donation— you are making a gift that keeps on giving.

You might be asking, what is an endowment fund and what is the purpose? An endowment fund is like a long-term savings account specifically for a nonprofit organization. When someone donates to the endowment, the principal (original donation amount) is invested rather than put into a general program fund. The organization then uses the interest or a percentage of the earnings each year to support programs and services. This approach ensures that the original donation remains intact, generating income year after year and helping sustain our mission far into the future.

A Lasting Impact

For those who might be considering how to support Oley in a meaningful way, there are several avenues to explore. If you are interested in learning more about how you can make a lasting impact, visit oley.org/supportoley to learn more.

We are here to guide you through the process and discuss options that align with your wishes and values at info@oley.org. ■

Dr. Darlene Kelly

Oley’s Annual Appeal

Sarah Ellis | Oley Board Director

I’m Sarah Ellis, a mom and researcher who, like many others, has learned to navigate a world I never expected to know so well. My daughter, Maisie, is a lively and curious first grader who has been on TPNIV nutrition since the day she was born due to short bowel syndrome. While Maisie has a rare and complex medical condition, she approaches life as it should be: filled with playground adventures, explorations on hiking trails, and laughter with her little brother.

During the day, I work on social policy to address homelessness, but when I come home, I enter a different world. I’ve become skilled at navigating care teams, deciphering Medicaid waivers, problemsolving supply shortages, and advocating for Maisie’s quality of life. In many ways, being Maisie’s mom has taught me more than any classroom or career ever could. I’ve learned the importance of community, resilience, and finding joy in the little things many people take for granted.

I’m excited to be joining the Oley Board this year to do whatever I can to make sure everyone on nutrition support feels the strength of this community. And I am so grateful to all the donors and partners who make Oley’s mission possible. Supporting Oley helps strengthen this community from hospital rooms to clinic rooms to living rooms. Each donation to Oley’s mission means one more person, one more caregiver, one more family doesn’t feel alone, no matter where they are on

Oley has been a lifeline for us and for families like ours, providing a network of people who understand our unique challenges. Through Oley, we’ve connected with other parents and families who share our experiences, worries, and hopes. Oley has offered us knowledge and support, but perhaps most importantly, it has given us a sense of belonging and a space where we feel understood. One of the biggest shifts we’ve felt as we’ve connected with others and learned more about nutrition support has been from thinking nutrition support was a “problem to solve” to appreciating the quality of life it can give Maisie and making sure she knows anything is possible for her (and for us as parents and caregivers).

Today, I’m asking you to consider supporting this incredible organization. Your gift helps families like mine continue to find connections and comfort, and it allows Oley to provide resources, information, and compassion that make a significant difference in our lives.

Thank you for considering donating to Oley. Your support means more than you can imagine to families like ours, who find strength and hope in this remarkable community.

With heartfelt gratitude, Sarah Ellis

P.S. Each donation to Oley’s mission means one more person, one more caregiver, one more family doesn’t feel alone, no matter where they are on their own journey.

Make Your Donation to the Oley Foundation

Empowered Conversations: Central Line Placement Questions

Beth Gore, PhD | Oley CEO

This resource, created with the help of patients who have experienced multiple Central Venous Access Device (CVAD) placements, offers a list of questions you might have for your Interventional Radiology (IR) or surgical team. It’s designed to empower you in your shared decision-making process, helping you guide the conversation with your provider. From understanding the types of devices available to knowing what to expect after placement, this resource ensures you are informed, involved, and confident in your care.

Have you ever had conversations about life-changing decisions, like central line placement, that can feel rushed or one-sided, leaving you as a patient feeling unheard? How can we best combine the clinical expertise of healthcare providers, with the lived experience of patients, including questions, values, and preferences?

Shared decision-making isn’t just a concept—it’s the foundation of care that respects both the clinical expertise of healthcare providers and the lived experiences of patients. It’s not always about getting everything we want but about being heard and having a clear understanding of the decisions being made. The intersection of clinical expertise and lived experience often creates the best path forward.

These conversations should not be one-way streets. Patients need to understand their options, feel confident in their choices, and leave the conversation knowing that their voice was part of the process.

This is not always the case. Some members share stories about how they were presented with a consent form moments before a procedure they didn’t fully understand, with no opportunity to ask questions. Others talk about how their preferences or concerns were overlooked, and they walked away with a central line that didn’t fit their needs or lifestyle. It’s not that the healthcare

providers didn’t know their specialty—they were, in fact, often experts. But sometimes it felt like the task was done TO us, not WITH us.

The goal isn’t to “get our way.” It’s to walk away from these conversations feeling confident that the choices made are the best for our health and situation, based on both clinical knowledge and our personal experiences, values, and preferences. The goal should be collaboration.

In the long-term nutrition support world, the need to collaborate for current and future vascular access needs is unique. Decisions made are sometimes long-lasting and far-reaching, which is why proactive conversations are even more important.

If the average central line is placed for a week and remains in the hospital, with the patient or family never needing to handle its care, the level of shared decision-making may be less extensive. Patients should understand the risks, benefits,

The intersection of clinical expertise and lived experience often creates the best path forward.

and alternatives. They should be empowered and informed about their role in keeping the line safe and be aware of when to alert healthcare professionals if they notice something isn’t right.

Continued on next page >

However, what should the conversation entail for patients who will be going home with a central line—where they or their caregivers are responsible for the line’s daily use and care, and it’s expected to stay in place for months, years, or even a lifetime? Shared decisionmaking should reflect the long-term impact this device will have on their life. Patients should be involved in discussions about the type, location, and care of the device. Yet, healthcare providers may not always realize the need to shift toward this more inclusive approach. It could be up to us as patients and caregivers to gently guide the conversation toward true partnership, ensuring that our voices are part of the decision-making process.

Oley recognized the need for a tool to build this gap—a resource shaped by the voices of our community. We gathered input from patients and caregivers who are relatively new to central lines and those who have had them for decades. We asked: What questions did you ask, or wish you had asked, before getting your central line placed? What questions do you think patients should be asking? We also included healthcare providers who place long-term central lines to learn what questions they would like to add to this conversation.

Their insights shaped this tool, offering a starting point for the conversations to consider having with your healthcare team. This is not an exhaustive list, and not every question will apply to everyone, but the real-life experiences are what make this tool practical and powerful.

The thumbnail images above direct to two versions of this resource, one simplified and one expanded. We hope you will consider starting with one of these the next time you’re preparing for a central line, so that you may feel empowered during the decision-making process. ■

Nutrition Support

ﬁrst

Living with nutrition support can be challenging, that’s why we provide the expertise for optimal outcomes

A multidisciplinary team approach where every patient receives a disease-speciﬁc, personalized care plan and individualized nutrition formulas that address the needs of the patient

• Patients receive training from Clinical Transition Specialists at the beginning of therapy, as well as access to educational videos and numerous instructional resources on therapy administration and pumps

• Patients are closely monitored by registered dietitians who are Certiﬁed Nutrition Support Clinicians (CNSC)

support + resources

HPN Week Recap: Oct. 13–19, 2024

Oley and our members celebrated Home Parenteral Nutrition (HPN) Awareness Week from October 13 to 19, 2024. We are proud of the educational opportunities provided during this HPN Awareness Week. Below are the highlights. To watch the recordings, please visit: HPN and Oley

Kidz Klub

This year, we relaunched our virtual Kidz Klub for our youngest members. Youth Program Coordinator Jade Lusk hosted an online session with fun activities, including a custom coloring project. Some participants had the opportunity to reunite with friends they had made at the in-person annual conference in June, while others met for the first time. Please note that Kidz Klub events are not recorded.

Several parents reached out afterward to express how meaningful the experience was for their children. Some mentioned that it was the first time their child had “met” another child on nutrition support. Stay tuned as we announce our next virtual Kidz Klub event!

Vascular Access Deep Dive

In an Oley survey in 2023, complications related to medical devices were among the chief concerns for respondents. Dennis Woo, RN, “The Vascular Guy,” provided an insightful deep dive into vascular access devices, procedures, and potential complications associated with chronic conditions such as dysautonomia and connective tissue disorders. His expertise sparked valuable discussions among attendees.

Oley is proud to present a new resource for people with Central Venous Access Devices (CVADs). This resource, created with the help of patients who have experienced multiple CVAD placements, offers a list of questions you might have for your Interventional Radiology (IR) or surgical team. It’s designed to empower you in your shared decision-making process, helping you guide the conversation with your provider. Click here to view that resource.

Bathing Practices

Mary Gallotto, RN, MSN, CPN, addressed the common question of how to bathe with a central line. She empowered patients with CVADs by sharing simple tips and reviewing helpful products for safe showering and bathing.

Her valuable guidance gave attendees the confidence to maintain their personal care routines comfortably and safely.

Product Shortages

Shortages in home nutrition support have become a pressing issue.

During the session titled “Behind the Scenes of Parenteral Nutrition

Shortages: Community Efforts,” speakers from the American Society for Parenteral and Enteral Nutrition (ASPEN), the End Drug Shortages Alliance (EDSA), and Angels for Change shared valuable insights on the ongoing challenges of parenteral nutrition shortages. They discussed the underlying causes and explored potential solutions. This informative discussion highlighted the importance of collaboration among manufacturers, clinicians, and patients to advocate for positive changes and enhance the community’s response to these challenges.

In light of recent events, the Oley Board of Directors issued a statement emphasizing the need to address the immediate crisis of sterile water and dextrose shortages and the importance of implementing long-term proactive solutions. Click here to read their statement. For the most current information on shortages, visit the HPEN Drug Shortages page on the Oley Foundation’s website. If you have been affected by shortages, please contact info@oley.org and share your experience.

Transfer of Care for Consumers and Clinicians

While the session primarily focused on shortages, service disruptions were also a significant topic for parenteral nutrition consumers in October. Many major providers of home parenteral nutrition (HPN) have begun reducing the number of parenteral nutrition consumers they serve. To address this, Oley has developed a set of questions, reviewed by clinical experts, pharmacy providers, and experienced patients. These questions aim to assist clinicians and educate patients during transitions between different

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IV therapy providers. Transitions of care can be challenging for everyone involved, and we hope these questions serve as a valuable tool during this process. You can find the resource here.

Oley has developed a clinical workflow considerations guide, with input and peer review from clinical experts, pharmacy providers, and patients with lived experience. This guide is designed to assist clinicians and inform patients in transitioning intravenous (IV) therapies between different companies.

We hope that this workflow document for transferring medical orders of parenteral nutrition (PN) will facilitate a safe transition for patients moving between care settings or pharmacies. You can find the guide here.

Consumer Conversations: Long-Term HPN Consumer Panel

In a prerecorded video, several long-term parenteral nutrition consumers shared their stories about facing the early challenges of living with HPN. In the video, they open up about their journeys and the early challenges they faced while living with HPN. With warmth and honesty, they talk about how they learned to advocate for themselves, build supportive communities, and find joy in their lives, no matter their complex medical needs. We invite you to check out this inspiring resource on our website, where you can watch it anytime you’d like!

How Patients Can Teach CVAD Experts What They Need to Know

In our final session of the week, Dr. Kevin M. Baskin, an Interventional Radiologist, led a patient-focused discussion about the systemic obstacles to improving vascular access care. Patients had the opportunity to share their experiences directly with clinicians, fostering open dialogue and collaboration aimed at enhancing care.

All recordings can be found here: HPN and Oley

Our goal for HPN Awareness Week was to share valuable information that addresses the diverse needs of our unique membership and to create opportunities for learning and connection within the HPN community. Oley is a place where members can engage with others who are facing similar challenges at different stages of their nutrition support journeys. ■

We want to hear from you!

How did you help spread awareness during HPN Awareness Week? Tag us on social media or share your stories with us at info@oley.org. Also, don’t forget to mark your calendars for Feeding Tube Awareness Week, taking place February 2-8, 2025.

behind the scenes

Bringing more to parenteral nutrition (PN)

Every patient is unique. As the US market leader in lipid injectable emulsions (ILEs),1 Fresenius Kabi offers more choices to nourish critically or chronically ill patients of any age from hospital to home. With a full portfolio of ILEs, clinicians have access to more options for more patients

Childhood & Nutrition Support

Jade Lusk | Youth Program Coordinator

Living on PN or EN can feel isolating at times, especially as a child using these rare forms of nutrition. People who use EN and PN may live far apart from another individual using the same or similar treatments. We hear from parents often how their child is impacted by the rarity of long term nutrition support. After our recent online Kidz Klub session one parent told me, “That was my daughter’s first time ever getting to “meet” another kid with a feeding tube like hers, and it was very meaningful for her.” As humans, we see the world around us and find comfort in others who have gone through similar life situations. Along with minimal representation of PN and EN in children’s literature, shows, and other forms of media, it can be hard for a child on these life saving treatments to feel included in their day to day life. We hope to change this one day at a time. From our Kidz Camp at our annual conferences, our Virtual Kidz Klub meetings, and creating online content and physical activities, we see a world where every child feels comfortable with who they are. You are not alone. It just takes a little extra effort to find your people, but it is so worth it.

A few weeks ago we relaunched our Virtual Kidz Klub. As the facilitator for these fun events, my heart was overflowing with the feeling of belonging. Every child should feel that same feeling no matter how nutrition support impacts their lives. As we host more opportunities for safe online childhood connection, we gradually bridge the distance between Oley children who live further apart. It was a much needed connection opportunity for all who joined.

FreseniusKabiNutrition.com

Below is a link to our first Oley coloring page. Used during our online session for HPN awareness week, the kids enjoyed coloring something that represented them. They were so proud to show off their final page at the end of our session. Be on the lookout for more fun activities like this one.

Feel free to print and have your child(ren) color the included page and tag Oley or use #iamoley in a picture of the finished product for all to see. We can’t wait to see them! ■

Kidz Klub Coloring Sheet

Conference Q&A

Q. How are sessions selected for the Oley Annual Conference?

A. We asked speakers to submit a session title, topic, learning objectives, and a description for our Annual Conference. We also asked about the topic’s relevance, the knowledge level required, the target audience, and if they’ve presented at Oley before. We had speakers focus on the following topic areas: Navigating the Healthcare Landscape, Quality of Life, Mental Health/ Psychosocial, EN/PN Therapy or Device Management, Advancements in Treatment, Practice, or Health Technology, or Supporting the Family or Caregiver. This year, we received nearly 70 session ideas on various topics. To keep things unbiased, Oley staff remove the names of submitters so reviewers can focus on the quality and relevance of each submission. Multiple reviewers score each submission and then discuss which sessions to select. They aim to create a balanced program, considering therapy type (enteral or parenteral), audience experience, age, and more.

Q. Who are the reviewers?

A. DREAM stands for Designing a Relevant and Engaging Annual Meeting. The DREAM Team includes Oley staff, patients, caregivers, clinicians, and corporate partners. Each member is committed to building a solid program. We’ll feature these members in the coming months.

This year’s submissions were especially high-quality, and we’re excited to see what the DREAM Team selects. We’ll share the final schedule in early 2025! ■

Power in Persistence: One Patient’s Journey to Being Heard

Katie Marschilok | Oley Member

My journey with chronic intestinal failure began suddenly in 2016, when I lost fifty-five pounds within four months, developed severe iron deficiency anemia, and had laboratory values indicative of malnutrition. My gastric emptying study (GES) demonstrated severe delay and gastroparesis was suspected. My local GI physician did a great job of correcting my malnutrition, transitioning me to home enteral nutrition (HEN, or tube feeding) and providing a referral to a hematologist for iron infusions. Eventually I was transitioned to home parenteral (IV) nutrition (HPN) in 2017, following an intestinal perforation. My personal quest to find a reason began. I was naïve to the limitations of current GI diagnostic tests and hoped that if the cause of my GP could be found, an effective treatment option could be realized as well.

This quest took me from the summer of 2016 to the fall of 2023; seven long years. I was seen by specialists in California, Massachusetts, New York, Ohio, Pennsylvania, and Washington, D.C. Additional diagnostic testing added to confusion. A 2016 SmartPill test indicated normal stomach emptying and delay in small intestine transit time. A 2017 four-day GES showed delay in stomach emptying, colonic inertia, and normal small intestine transit time. Multiple scans during the seven years showed various abnormalities, but nothing definitive.

A 2022 gall bladder surgery revealed multiple abdominal adhesions. It was hoped that upon their removal I would improve. The slight improvement I experienced was very short lived. I tried every available motility medication and experienced

escalation in pain and symptoms of bloating, diarrhea, and bile acid diarrhea.

What do any of us with chronic intestinal challenges hope for when we meet a new GI specialist? I hoped to be listened to, and treated with compassion and understanding. I dreamt of having a specialist familiar with a similar case discuss ideas of how to help me. How disappointing when the following words were said to me:

“You are not in my wheelhouse.”

“Isolated small intestine dysmotility, you are the rarest of the rare.”

“Try eating oatmeal every day, that might help.”

“I hear bowel sounds, you can’t have gastroparesis.”

“If you were twenty years younger, this would be a different conversation.”

“Your local MD is doing a great job of managing your HPN, I don’t see anything that we can improve upon.”

“Small intestine surgery or transplant requires more recovery than anyone your age should want to go through.”

“There is nothing wrong with you except pelvic floor disorder, and maybe a pulled abdominal muscle. Don’t lift anything heavy.”

“Restart enteral feeding, you can’t live the rest of your life on HPN.” (I had tried that several times, to no avail and great pain.)

Exhaustion, frustration, and dealing with so many disappointments made me decide to give up on the big deal GI specialty clinics when I read information about yet another specialty clinic, in Pennsylvania (distinct and in a different city from the one I had visited previously). My GI doctor encouraged me and referred me, and after stating that this would be my last attempt, I moved forward.

Illuminating Records

Prior to my first appointment in September 2023, I had tracked my symptoms daily for one full year in easily readable format on one sheet of paper. It looked like this:

Date: Pain (on a scale of 1 to 10); Diarrhea (number of times); Bile acid diarrhea (BAD; number of times); Bloating; Lbs. lost

For example: Date: Pain 4, D 6, BAD 2, Bloat, 3 lbs.

No entry meant I had no symptoms and felt well, with pain level below 2. The statistics for one year surprised me. I had terribly challenging days 25 percent of total days, was recovering from bad days 25 percent of my life, and felt ok approximately 50 percent of the time. There was no pattern or predictability to my bad days. I also took a picture of my severely bloated abdomen on one of my most difficult days.

I informed my new doctor that despite my age of 69, I had no comorbidities and had been a healthy active person. I laid the horrific-looking picture and my one-page symptom log that included the statistics in front of my new doctor. He kept looking at the picture and asked very probing questions. He made no promises, but stated that upon having time to study my scans in detail he would call me with his thoughts. Three months later we had a substantive telephone appointment and he proposed surgical intervention.

Four months later I had GI surgery (not a transplant) and it was life altering. I am currently in the “intestinal rehabilitation” phase of my recovery. I gradually increased my oral calories/day and the real miracle is that I have had no recurrence of episodes of terrible painful days. I don’t doubt that I might periodically need some level of nutrition support, but to have a life free of abdominal pain and other accompanying symptoms and to be able to eat is an amazing gift.

I know that two of the previous specialists I saw were GI surgeons with the surgical skills to help me. I feel they did not put the time into studying my scans and tests and dismissed me quickly. They both made comments about my age. One year of objective concise data and the startling picture that stayed with my chart might have helped make the difference. While in Pennsylvania for an appointment, we went to a museum that had a section devoted to the department of the medical center

that my surgeon was a part of. I saw a video clip of the doctor that the center was named for, stating that he settled in that city because innovation was embraced and people on the street exhibited a “Why not?” attitude. That attitude, plus the belief that there must be something that could be done to improve my situation from my doctor, changed my life.

Hope

I am sharing my experience in the event it might give someone else hope or a helpful strategy. Prepare for any medical appointment by creating the most compelling description of your situation. My picture and objective data spoke louder than my words. The description should be concise, complete, and easy to understand quickly.

Become the best advocate for yourself you can be. If you don’t have the energy, or ability, to advocate strongly for yourself, ask for help. I wish everyone challenged with chronic GI issues better health and a better future. ■

Research Announcement

The following research study has been deemed appropriate for home parenteral and/ or enteral nutrition consumers by the Oley Clinical Advisory Committee. However, the Oley Foundation strongly encourages anyone considering participating in medical research to discuss the issue with their managing physician before signing up.

Note that the research described below addresses topics related to mental health, including thoughts of suicide, which may be distressing for some individuals. If you choose to participate in the research and feel triggered or distressed while participating, you may stop taking the survey, and please consider reaching out to a mental health professional or crisis support hotline for assistance.

Approximately one in four American adults have a disability, and disabled American adults are significantly more likely to experience mental distress and suicidal thoughts and behaviors compared to their abled counterparts. However, insufficient research has been conducted on the underlying factors contributing to this disparity in mental health.

The minority stress theory posits that stressors related to a person’s minority status, such as experienced stigma and discrimination, internalized stigma and identity concealment— all of which people with disabilities experience— contribute to adverse mental health outcomes. While minority stress has been linked to suicidal thoughts and behaviors in research on sexual and racial minorities, its relationship with suicidal thoughts and behaviors in disabled populations has not been studied yet. Therefore, this is the research question that my study will address: Is there a relationship between minority stress and suicidal thoughts and behaviors in people with disabilities?

Existing research has found that thwarted belongingness and perceived burdensomeness are associated with minority stress and predictive of suicidal thoughts and behaviors, suggesting that these factors may mediate the relationship between the two. Additionally, studies have shown that people with disabilities who identify as disabled and have friends with disabilities are more likely to experience heightened self-esteem and life satisfaction, so these factors may buffer the relationship between minority stress and suicidal thoughts and behaviors.

This study consists of a 30- to 45-minute survey. Each participant who completes the survey will receive a $10 Amazon gift card. If you live in the US, are over 18 years old, and identify as having a disability or chronic condition, visit bit.ly/smpdstudy to complete a short survey to see if you qualify. ■

MARCH 22–25, 2025

COLUMBUS, OHIO

SO MANY OPPORTUNITIES

▸ Keep up with the latest research and evidencebased practices in nutrition support

▸ Join live presentations and discussions

▸ Ask questions, connect with experts and peers

▸ See product innovations

SO IMPORTANT

To you and others on home nutrition support therapy

SPECIAL DISCOUNTS

Available for consumers and caregivers

Email andreac@nutritioncare.org to register at discounted rate.

Introduce Your Clinician to the American Society for Parenteral & Enteral Nutrition

If they are not already familiar with our organization, you can introduce your clinician who provides your nutrition support therapy to the American Society for Parenteral and Enteral Nutrition (ASPEN). ASPEN is a medical professional organization that aims to improve patient care by advancing the science and practice of clinical nutrition and metabolism. Our main audience is clinicians who provide nutrition support, including enteral nutrition and parenteral nutrition, to patients. This includes dietitians, nurses, nurse practitioners, pharmacists, physicians, physician assistants, scientists, and other health professionals. Familiarity with ASPEN can support improved patient care. Here are some of the key reasons clinicians involved in providing nutrition support to patients should pursue membership with ASPEN:

• ASPEN is the premier society that produces clinical guidance documents on best practices in nutrition support.

• ASPEN provides training, including on-demand courses and live webinars, on nutrition support topics. These offerings provide continuing education (CE) credit for health professionals.

• ASPEN hosts an annual conference that features the latest research, developments, and guidance in nutrition support.

• ASPEN offers access to a network of interdisciplinary professionals focused on nutrition support.

• ASPEN offers professional development and leadership opportunities for those who want to contribute more broadly to developments in the field.

Point your clinician to the ASPEN website (www.nutritioncare.org), or direct them to email info@nutritioncare.org for more information. ■

Celebrating 50 Years of ASPEN and our trailblazing community!

Oley Events 2024-25 Calendar

Check Oley.org or other appropriate websites for the most up-to-date information on the events listed below.

November 22, 2024: Oley Community Connections

December 17, 2024: Empowering the Consumer to Recognize Routine, Urgent & Emergent Challenges in Home Enteral Nutrition

December 27, 2024: Oley Community Connections

January 6, 2025: Oley Award nominations accepted now through March 21, 2025

January 14, 2025: Legal Considerations on the Nutrition Support Journey

February 2–8, 2025: Feeding Tube Awareness Week

February 28, 2025: Rare Disease Day

March 21, 2025: Oley Award nominations due

March 22–25, 2025: Oley exhibiting at and participating in American Society for Parenteral and Enteral Nutrition (ASPEN) Nutrition Science and Practice Conference, Columbus, OH

June 17–20, 2025: Oley 2025 annual conference, Primed and Ready to Grow, Charleston, SC

For more information, visit oley.org, email info@oley.org or call (518) 262-5079.

Don’t Forget to Register!

Learn more about and register for Oley Community Connections at oley.org/supportgroups and for Oley Webinars at oley.org/webinars. All Community Connections and Webinars are offered free of charge.

Community Connections

4th Friday of each month (typically) • 6:00 PM ET

Our Community Connections events provide members of the nutrition support community an opportunity to gather virtually and discuss a topic of importance to them. Intended primarily for nutrition support consumers, caregivers, friends and family members, they provide a space where our members can feel heard and connect with and learn from one another. Each event will be focused on a specific topic of conversation. Events will be facilitated by Oley staff with support from Oley Ambassadors.

Webinar

Empowering the Consumer to Recognize Routine, Urgent and Emergent Challenges in HEN

Presented by Carol Ireton-Jones, PhD, RDN, CNSC and Beth Lyman, MSN, RN, FASPEN, FAAN

DECEMBER 17, 2024 • 11 AM-12:30 PM ET

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.

SPEAK ONE-ON-ONE ABOUT SBS

TO A PATIENT OR CAREGIVER WHO UNDERSTANDS

LEARN ABOUT HEAR STORIES ASK QUESTIONS personal experiences with SBS and a potential treatment option

WITH SBS about the SBS journey

PEGGY, LIVING WITH SBS

MOM, JODI

thank you

Thank You Corporate Partners

Please join Oley in thanking the companies that support the foundation year-round. Learn about some of our corporate contributors in their own words below. For a complete list of corporate partners, visit Oley.org/PartnerShowcase.

At Avanos, we are passionate about helping those living with a feeding tube get the nutrition and support they need. This drives us to continuously improve and grow our portfolio of products and support services to help you get back to the things that matter.

B. Braun Medical Inc., a leader in infusion therapy, pain management and automated compounding, develops, manufactures and markets innovative medical products and services to the healthcare industry. The company is committed to eliminating preventable treatment errors and enhancing patient, clinical and environmental safety. To learn more, visit bbraunusa.com.

New Partner!

In 2022, Enterra Medical was formed to focus on helping more gastroparesis patients find relief through Enterra Therapy—a device originally developed by Medtronic and approved by the FDA in 2000 under a Humanitarian Device exemption. Enterra ® Therapy is the first and only device designed to reduce the nausea and vomiting associated with diabetic or idiopathic gastroparesis through gastric electrical stimulation (GES).

Fresenius Kabi is a leading global healthcare company that focuses on pharmaceuticals and medical devices used to care for critically and chronically ill patients inside and outside of the hospital. Fresenius Kabi products include intravenous specialty and generic medicines, transfusion technologies, infusion therapies, clinical nutrition, and related devices.

Ironwood Pharmaceuticals is a leading global gastrointestinal (GI) healthcare company dedicated to patient-centric innovation and on a mission to advance the treatment of GI diseases and redefine the standard of care for GI patients, including Short Bowel Syndrome with Intestinal Failure.

Optum Infusion Pharmacy is the next-generation infusion pharmacy that works for you. Our collaborative team is made up of experts in nutrition, nursing and pharmacy. And our patient liaisons have personal experience living with parenteral nutrition. Grounded in clinical innovation, we provide consistent, convenient and compassionate care.

New Partner!

Protara is a clinical-stage biotechnology company committed to advancing transformative therapies for people with rare diseases. Protara is developing IV Choline Chloride, an investigational phospholipid substrate replacement for patients on parenteral support who are unable to meet their choline needs via oral or enteral routes. For more information, visit protaratx.com.

Real Food Blends provides 100 percent real food meals and nutritional variety to people with feeding tubes. With six meals and one snack, and only five to eight ingredients in each, it is the only ready-tofeed, true blenderized diet option. Real Food Blends is covered by many insurance plans under HCPCS B4149 and is available through DMEs and home infusion companies, or direct via realfoodblends.com and Amazon.com.

Soleo Health is an innovative national provider of complex specialty pharmacy services administered in one of our many infusion centers, in the patient’s home or a provider’s office. Our interdisciplinary team is comprised of highly experienced physician specialists, clinical pharmacists, registered nurses, reimbursement specialists and patient care ambassadors. The team closely collaborates with our referring partners to provide an exceptional patient experience. We have pharmacy licensure in 50 states and national nursing coverage, which allows us to manage patients throughout the United States.

Takeda is a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to bringing better health and a brighter future to patients by translating science into highly innovative medicines. To learn more, visit takeda.com.

Zealand is a biotechnology company focused on the discovery and development of peptide-based medicines. More than ten drug candidates invented by Zealand have advanced into clinical development, of which two have reached the market and three are in late-stage development. The company has development partnerships with a number of bluechip pharma companies as well as commercial partnerships for its marketed products. Founded in 1998 and headquartered in Copenhagen, Denmark, with a presence in the US, Zealand’s focus is in the areas of metabolic and gastrointestinal disorders, including SBS.

Notable Individual Contributions

Among the many generous contributions we receive, countless are made in honor or memory of individuals who have profoundly impacted the lives of our donors. Below is a list of honorees and tributes received between July 20 and October 23, 2024. We are sincerely grateful for your support, which helps us advance our mission.

Memorials

In Memory of Clarence “Oley” Oldenburg; Alan Robinson Tributes

In Honor of Anna Cooper; Joe Migneault; Jeff Nemeth; Jeffrey Schesnol; “Thank you to the entire Oley Team for all the years of service in bettering the quality of life for our patients and their families”