Lifeline Letter, Fall 2025

Volume 48, No. 1 Fall 2025

LIFELINE LETTER Connecting the nutrition support community, line by line

CONFERENCE HIGHLIGHTS Community, Connection, and Growth: This year's conference brought us together through engaging breakout sessions, impactful education, and shared moments that inspired and empowered us all.

BUILDING CONNECTIONS: MIRANDA & SHAYLEE’S STORY Peer support is more than a program — it’s a lifeline. Connecting members with others who truly understand their journey offers powerful encouragement, essential education, and real hope for living fully on nutrition support.

OLEY ADVOCACY Oley Policy & Advocacy 2025 Update: Driving change through advocacy, we're championing the needs of the nutrition support community and shaping policies that matter.

LIFELINE LETTER 10 3 Staff Updates

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A quarterly publication of the Oley Foundation

17

Our Voice at FDA

5 Remembering Jeff

6 Building Connections

10 A First Time Experience

13 Award Winners

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Conference Highlights

18 Managing Malnutrition

22 Oley Policy & Advocacy Update

23 Letter from Incoming President

The Oley Foundation is a home nutrition therapy community and advocacy group. Learn more at oley.org

@2025 The Oley Foundation. All rights reserved.

This resource is provided for educational purposes only and is not intended as medical advice. It outlines general expectations based on current evidence-based guidelines, but individual care protocols may vary depending on hospital policies, provider judgment, and patient-specific needs. Always consult your healthcare team for personalized medical guidance and before making any changes to your care plan.

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Lifeline Letter

LIVE: OCTOBER 21 7:00PM - 8:00PM ET

To register visit www.oley.org

Chief Executive Officer: Beth Gore, PhD Director of Operations: Maria Castrodad Director of Corporate Engagement: Tracey Giambertone, MS, RDN, LDN, CNSC Manager of Education: Kalee Eichelberger, MS, RD, LD/N, CISC, CHES Operations Manager: Cathy Harrington Operations Coordinator: Melissa Hansen Operations Specialist: Whitney Kramer Youth Program Coordinator: Jade Lusk Digital Marketing Coordinator: Heather Byrtus Digital Marketing Coordinator: Amayah White Community Engagement Coordinator: Vincent Rosche Community Care Coordinator: Shakira Valentin IT Support Specialist: Sam Gore 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; Shirly Huang, MD; Sivan Kinberg, MD, MS, MA; Vanessa Kumpf, PharmD, BCNDP, FASPEN

OLEY FOUNDATION 2025 - 2030 STRATEGIC PLANNING VIRTUAL TOWN HALL Our Mission: To enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community, and innovation.

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

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

Science & Medicine Advisor: Manpreet Mundi. MD FASPEN The Oley Foundation provides its 30,000+ members with critical information on topics such as medical advances, research, and health insurance.

The foundation provides trusted education and resources, builds community through peer support, amplifies the patient voice in advocacy, and improves the lives of those on home IV nutrition and tube feeding.

@the_oley_foundation

@the_oley_foundation

@TheOleyFoundation

@TheOleyFoundation

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

Lifeline Letter:

Publisher:

Fall 2025 Volume 48, No. 1 Phone: (518) 262- 5079 Email: info@oley.org oley.org

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

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Sam is a dedicated and resourceful IT professional with a strong drive to solve problems and support organizational technology needs. Known for his adaptability and eagerness to learn, Sam takes pride in providing reliable tech solutions and ensuring smooth day-to-day operations for the team. With a practical, hands-on approach and a genuine interest in helping others, he’s committed to keeping systems running efficiently and users supported every step of the way. He will be a valuable resource in keeping our systems running smoothly and supporting both staff and community needs.

STAFF UPDATES structured our Oley Staff Team is—and it just

Sam Gore

got even better! Please join us in welcoming

IT SUPPORT SPECIALIST

We’re excited to share how awesome and

Sam Gore and Amayah White.

Amayah is a passionate and creative marketing professional with a strong enthusiasm for content creation and storytelling. Known for her bubbly personality and collaborative energy, she thrives on brainstorming fresh ideas, building engaging strategies, and finding solutions that drive results. With a natural ability to connect with others bringing visions to life, she takes pride in crafting content that resonates and inspires. Guided by a genuine heart for people, Amayah sees marketing as more than strategy - it’s a way to make a meaningful impact, amplify voices, and help others grow. She’s always ready to contribute with positivity and creativity, committed to ensuring every project not only succeeds but also leaves a lasting difference.

Amayah White DIGITAL MARKETING COORDINATOR

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REMEMBERING JEFF HOELLE // CATHY HARRINGTON

“

“ I could go to my high school graduation where a few people would support me, or I could go to the Oley conference where everyone there would support me. ”

Jeff was a super friendly guy who always had a fun story to share. He was a staple at all Oley conferences front and center at the registration

Jeff was set to attend the 2025 annual Oley conference

table. He was also known as Mr. Freaking Oley. Jeff

and take his seat at the registration table once again,

and his family have been long-time members of the

unfortunately he passed away on May 15, 2025. This left a

Oley Foundation. His daughter Alicia was diagnosed

huge hole in so many people’s hearts and sitting at the

with hypoganglionosis and had been on TPN since

registration table this year without my friend was vastly

birth in March 1995. Alicia had given up attending

different.

her own high school graduation to attend the 2003

The future is never certain, and we should embrace the

Oley conference in St. Augustine, FL.

friends we meet along the way with gratitude. Thank you, Jeff, for being such a virtuous individual and sharing your

Sadly, Alicia passed away in 2013 and Jeff and his

time, stories and commitment with your Oley family. It

wife Rose took a step back for a few years from the

has truly been an honor.

conference. Jeff found his way back to the registration desk where he was always a huge help.

Whether he was handing out name badges and checking attendees in, selling 50/50 raffle tickets, or giving directions to sessions he was always so positive and upbeat. For 41 years Jeff was a devoted fire fighter and named fire fighter of the year in 2022. He worked as an Instrumentation Technician until he retired.

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BUILDING CONNECTIONS: Miranda & Shaylee’s Story // VINCENT ROSCHE, OLEY COMMUNITY ENGAGEMENT COORDINATOR

“

“ It’s been especially helpful talking to Shaylee, who has reassured me that living a long life is still possible even on TPN. ”

D

uring our August Community

Within 24 hours, I heard back from Oley member

Connections meeting, we welcomed

Shaylee Hunter who enthusiastically offered to

several new members, including 21-year-old Miranda Ritter. Miranda lives on

connect with Miranda. Shaylee also lives in Utah, just

home parenteral nutrition (PN) for nutrition

While most of our peer matches meet virtually, it’s

support and uses a wheelchair.

rare and exciting to connect with members who can

As the meeting was wrapping up, Miranda

meet in person. A few days later, Shaylee shared that

reached out to me asking if I could connect her

she and Miranda had met—and had an amazing time

with someone for one-on-one support outside

getting to know each other. It was incredibly rewarding

of the group. Community Connections is Oley’s

to hear this news.

monthly virtual support group which focuses on

Many of our members feel uncertain about what their

sharing tips, experiences, and encouragement

future might look like. Connecting them with peers

for living well with nutritional support. But

who can show firsthand that a full, meaningful life is

sometimes, a personal peer connection can

possible on nutrition support is one of the most

make all the difference.

powerful things we can do. Peer-to-peer matching isn’t

The next day, Miranda and I connected by

just a program, it’s a lifeline, and it’s an essential part

email. I learned more about her such as where

of how we help members navigate their journeys with

she’s from, her hobbies, and a little about her

the right education, support, and hope.

like Miranda, which made this pairing extra special.

health journey.

Join us every last Tuesday of the month for Community Connections.

Want to get connected? Email @info@oley.org

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One conference. Endless impact .

OLEY 2025: A CONFERENCE TO REMEMBER

“

“You don’t have a right to the cards you think you should have been dealt. You have an obligation to play the heck out of the ones you're holding.” // CHERYL STRAYED

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THIS IS EDUCATION THAT TRULY EMPOWERS

The Oley 2025 Conference was an empowering

Attendees left with practical tools and valuable

week filled with connection, learning, and plenty of

industry connections. Thanks to 64 travel grants,

fun. With 494 attendees—including 209 first-timers—

we were able to welcome voices from across 32

the energy was vibrant and welcoming. Breakout

states, Washington DC, three Canadian provinces,

sessions covered everything from medical updates

and four countries—making this year one of our

and nutrition research to caregiving strategies and

most inclusive and global gatherings yet. From

emotional wellness, blending expert knowledge with

start to finish, it was a week of empowerment,

lived experience.

learning, and joy, filled with friendships,

Patients, caregivers, and professionals came

knowledge, and memories that will last until we

together in meaningful dialogue where every voice

meet again next year.

mattered. Beyond learning, the week was filled with

This year’s Kidz Klub was another one for the

joy and community spirit. Pirate costumes sparked

books, with a record of 50 children bringing joy,

laughter, the fashion show celebrated creativity and

laughter, and connection. For many, it was more

courage, and karaoke night brought everyone

than just a program—it was a chance to simply play,

together in song and cheer.

belong, and make friends who understand their

The Experience Expo featured 51 exhibitors

world.

offering hands-on solutions, resources, and innovations to support daily life.

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Thanks to 18 dedicated Kidz Klub volunteers and generous sponsors, the week was filled with unforgettable moments—from Jammin’ Jammies night and a visit from the local aquarium to a creative art session with a local artist. These experiences created memories the kids will carry long after the conference.

Our award-winning Nutrition Support Team offers thorough, on-going monitoring and top-notch clinical care.

We partner with you and your provider to help you reach your nutritional goals when you receive parenteral or enteral services at home.

AmeritaIV.com

STAFF PERSPECTIVE

A FIRST TIME EXPERIENCE // KALEE EICHELBERGER

“ These connections sparked conversations that I know will continue well beyond the event. ”

Attending the Oley Annual Conference in person

What stood out most, though, was the

for the first time was a powerful and inspiring

strength of the Oley community itself—a

experience. From the moment I arrived, I was

diverse, passionate network united not just by

immersed in a vibrant community of patients,

medical needs, but by empathy, shared

caregivers, healthcare professionals, and consumer

experience, and the drive to make a difference.

advocates, all brought together by a shared

From our fashion show to our educational

commitment to improving the lives of those who rely

sessions, attending in person brought that

on nutrition support.

energy to life in a way that can’t be replicated

Engaging face-to-face with individuals who live with

elsewhere.

these challenges every day was humbling and eyeopening. Conversations with patients and caregivers revealed the resilience and strength behind the scenes, while professionals shared their dedication and expertise with compassion and clarity.

There was a genuine sense of solidarity—of learning not only from experts, but also from one another.

Throughout the conference, I had the opportunity to attend sessions led by leading voices in clinical nutrition, patient care, and innovation. Their insights went beyond theory—offering practical tools, new research, and a clear drive for change. The exhibit hall was equally energizing, with innovators showcasing the latest technologies and resources designed to improve quality of life.

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SUPPORT FOR LIVING WITH A FEEDING TUBE

Feeding tubes can change daily life in unexpected ways.

No matter your stage, support makes a big difference.

MIC-KEY* Cares is here with complimentary resources, tips, and connection.

DISCOVER THE BENEFITS OF BECOMING A MEMBER CURATED CONTENT

PEER COMMUNITY

BE IN THE KNOW

NURSE SUPPORT

Receive personalized emails based on your lifestyle needs

Learn about new tube feeding products and upcoming events

A dedicated space to connect with fellow tubies and caregivers

We are here to help with product use questions & concerns

PLUS…EVERY MEMBER WILL RECEIVE A WELCOME KIT. • Info Card • Nurse Support Magnet • AVA (tubefeed puppy) • Welcome Letter

Available to everyone, no matter the kind of tube or brand used

GETTING STARTED IS EASY! Simply visit tubefed.com/mic-key-cares.

*Registered Trademark or Trademark of Avanos Medical, Inc., or its affiliates. © 2018-2025 AVNS. All rights reserved. COPY-08546

CELEBRATING EXCELLENCE AT THE OLEY 2025 AWARDS ABOUT THE OLEY AWARDS

The Oley Awards honor individuals and organizations who embody the spirit of home nutrition support through courage, compassion, innovation, and leadership. By celebrating their contributions, we recognize positive change and inspire others to strengthen a future where patients are supported and empowered to thrive.

WHAT WE CELEBRATE

WHY IT MATTERS

Our awards highlight the many ways people make a difference:

These awards shine a light on the patients, caregivers, and clinicians who often work quietly behind the scenes. They raise awareness, offer encouragement, and affirm the values that define the Oley community: compassion, inclusivity, trust, and resilience.

// Hero Awards honor patients on home parenteral or enteral nutrition who show courage and perseverance. // Rising Star Award recognizes patients 17 and under who inspire others with their positive outlook. // Caregiver Extraordinaire celebrates caregivers who provide unwavering support and compassion. // Joan Bishop Lifetime Achievement Award honors those who have advanced the field through decades of dedication.

TAKE A LOOK AT OUR 2025 AWARD WINNERS.

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FEATURING

OUR WINNERS

I

CAREGIVER EXTRAORDINAIRE // MAGGIE ENGLISH-VLADYKA

am a caregiver to a very special lovely lady named McKenna. She had a G tube placed a month after she was born. I have done my best advocating for her, especially for her right to privacy while being fed. My solution was to invent an iron patch that attaches to her undershirt so her abdomen is not exposed.

Sponsored by: Ironwood Pharmaceuticals

In September of 2024, the patch premiered as the first feeding adaptive solution on a New York Fashion Week runway with The Runway of Dreams show. I wouldn’t change a thing! Taking care of McKenna has been an honor.

HEN HERO AWARD Sponsored by: Nestlé Health Science

My name is Katie McMullen. I have struggled with my health since I was 19. That year my body went into full failure. Every organ failed and I was given a 0% chance of survival. I am now 38 and thriving. I’m a fighter and I wasn’t done with this life.

My feeding tube journey started that same year. It wasn’t permanent, and I often didn’t use it or even have it. It wasn’t until 3 years ago that I finally agreed to a surgically placed g tube. This decision has proven to be the best and kindest decision I have ever made for myself.

// KATIE MCMULLEN

So many think that a feeding tube is a horrible restriction, the end of life as they know it, a prison. I choose to LIVE with a feeding tube.

For me it is the beginning. I have traveled extensively, even spending 3 weeks in Kenya last summer traveling abroad is something I absolutely love and have found ways to make it easier.

I adapt bags to suit the activities I love. I hike, camp, kayak, swim, travel and so much more. I have a passion for helping people and for the past 2 years I have walked so many amazing people through this journey. From pre op through early Tubie life.

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HPN HERO AWARD // SHAYLEE RAYE

Sponsored by: Nutrishare

ShayLee Raye is a passionate advocate, communications professional, and resilient survivor whose journey with a feeding tube has become a powerful testament to strength and visibility. Born with Chronic Intestinal PseudoObstruction and later diagnosed with Short Bowel Syndrome, ShayLee has lived over a decade with an ostomy and has been dependent on total parenteral nutrition (TPN) since the age of two.

Despite these medical challenges, she earned her bachelor’s and master’s degrees in communication from Weber State University, graduating early with honors and an emphasis in Civic Advocacy.

At roughly two months old I was diagnosed with neuropathic chronic intestinal pseudoobstruction (CIPO). I stayed at seven hospitals in five different states, and underwent five surgeries before I was a year old, including a CVL, G-tube, and ileostomy placement. I have been on TPN everyday since my diagnosis, and despite the inevitable hardship, it has given me the opportunity to live my life to the fullest.

I am currently a senior student at a private school in Fayetteville, Arkansas, with a 4.0 GPA. I’m in the process of preparing for college applications, and exploring what I might like to pursue. My primary interests are film and media production, visual art, fashion design, photography, event planning, and entrepreneurship. I’ve always been an ambitiously creative person, and with my TPN I have the ability to choose the best school to support my efforts.

She currently serves as the Lead Children’s Advocate at Safe Harbor Crisis Center, the only domestic violence shelter in Davis County, Utah, where she navigates the child welfare system and advocates for survivors.

ShayLee is also the Director of Social Media for Girls With Guts, a national nonprofit supporting women with IBS, IBD, and ostomies.

Through her platform, Invisible Disabilities; Visible Awareness, ShayLee educates the public on life with chronic illness and medical devices often hidden from view. As Mrs. Utah Petite 2025, she will be the first contestant to walk the national stage with her ostomy and feeding tube proudly visible, proving that beauty, advocacy, and authenticity can thrive side by side.

RISING STAR AWARD

Over the years I have done gymnastics, // MADELYN MORRIS danced, learned to sing (tried to), won competitions in horseback riding, played volleyball, and excelled in many other disciplines. I look forward to what the future holds for me.

I’m proud to accept this award. It serves to remind me of how far I have come, especially on the days that I fail to see the extent of my accomplishments, and how remarkable they are regardless of my challenging circumstances.

In whatever direction my life takes me, I hope to positively represent the chronic illness community- to be an example of what it looks like to defy our odds, and that it is possible to aim high.

Thank you to the Oley community for finding me deserving of this award, and a congratulations to my fellow nominees

Sponsored by: Abbott

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JOAN BISHOP LIFETIME ACHIEVEMENT AWARD // REID NISHIKAWA, PHARMD, FASPEN, FCSHP

Reid has been caring for patients requiring long-term parenteral nutrition (PN) for 39 years with a focus on improving quality of life as well as decreasing the incidence and risk of complications in the long-term PN patient population.

Vascular access interests have included implementation of interventions to reduce infectious and mechanical complications in the long-term PN patients.

His research interests have paralleled this clinical focus: Recipient of the ASPEN Distinguished Nutrition Support Pharmacist Award, Recipient of the ASPEN Stanley Serlick Award for promoting patient safety, Recipient of the Oley Foundation Nan Couts Award for patient advocacy, and Member of the ASPEN Parenteral Nutrition Safety Committee which publishes guidelines for clinicians managing PN patients.

Option Care Health is committed to helping nutrition support patients restore a better quality of life.

For more than 45 years, Option Care Health has been your reliable nutrition support provider even during times of market disruption and supply challenges. Still here, still committed—trust us to be there when you need it.

Explore the many benefits of Restore+ For more information: call 877.686.2622 or visit optioncarehealth.com.

OLEY AND ANGELS FOR CHANGE — A PARTNERSHIP IN ACTION // BETH GORE

O

ver the past two years, Oley and Angels for Change have joined forces to confront one of the most critical threats to patient wellbeing: drug shortages.

I found Angels for Change through an article about shortages and the work of their Chief Change Maker, Laura Bray. Curious, I reached out and asked, “Why are you looking into parenteral nutrition (PN) drugs?” She told me she wasn’t, at least not intentionally. But how were 17 of the 20 drugs on her shortage list some of the core components of PN? Laura shared that her focus was on the most vulnerable drugs for vulnerable populations. These are medications with no safe alternatives and a high risk of going short. She had stumbled upon the decades-long PN shortage crisis.

Listening to her, I realized she was the first person I’d heard approach this issue differently.

She hadn’t given up. Instead, she was determined to build a more resilient drug supply chain. She works on the national level forming coalitions, uniting stakeholders, raising funds, and bringing the urgency of this issue to Congress and the White House.

She also works with patients one at a time by running a hotline where patients and providers can call if they can’t access a needed drug.

Often the supply exists; it just needs to be unlocked and rerouted. Through her network and persistence, Laura ensures patients get what they need, when they need it. Because of this partnership, Oley is now connected to leaders across the entire drug supply chain, people who can and must make different choices going forward. The problem isn’t solved yet, but we are closer than ever thanks to Angels for Change.

Ironically, both Beth and Laura live in the Tampa Bay Florida area. Her daughter Abby, age 15 and the inspiration for Angels for Change, and Beth's son Manny, age 16 and why she is passionate about nutrition support, both go to the same Tampa Children's hospital. The first time they connected, Beth said one day there will be a headline that says "Two Tampa Moms..."

Our partnership is rooted in friendship and in a shared commitment to ensuring no one misses their life-sustaining therapy. Expect to see us continue this work by responding faster, speaking louder, and achieving more together.

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OUR VOICE AT FDA Advocacy in Action

O

n August 28, 2025, Oley CEO Beth Gore represented the patient voice at the FDA Compounding Quality Center of Excellence Annual Conference in Bethesda, MD. She joined a panel discussion on how to ensure that special populations —such as long-term nutrition support patients— continue to have access to safe, reliable medications, even during times of shortage.

Beth also met with several of Oley’s coalition partners, including ESDA, Angels for Change, and USP, to discuss shared concerns. For decades, essential ingredients like sterile water, amino acids, electrolytes, and lipids have cycled on and off the national shortage list.

The questions remain: How do we build a more reliable supply chain? What changes are needed?

And how can Oley help lead this conversation on behalf of patients? Another critical issue raised was enteral formula. Unlike infant formula, which falls under strict regulation, enteral formula is often left in a gray zone. Can we work with regulators and partners to close this gap and better protect patients?

Oley’s dedication to advocacy ensures that our community’s needs stay front and center in these important policy conversations.

We’ll continue to share updates as initiatives move forward and we invite you to be part of the process.

We want to hear from you: What policies should Oley be exploring to support?

What shortages are you experiencing or have you experienced in the last year?

What messages would you like us to take back to the FDA? To send your feedback, email info@oley.org

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PREVENTING AND MANAGING MALNUTRITION THE POWER OF TEAMWORK AND THE PATIENT/CAREGIVER VOICE // KALEE EICHELBERGER, MS, RD, LD/N, CNSC, CHES // IN COLLABORATION: PATRICK REEVES, MD, FAAP, DABOM

Malnutrition affects people of all ages and can lead to serious health problems. It may look different in children and adults, but its effects—like health complications, longer hospital stays, higher medical costs, and lower quality of life—are common across the board. While catching nutrition problems early and treating them quickly are important, one of the best ways to prevent malnutrition is through teambased care.

WHAT IS MALNUTRITION?

In the U.S., the American Society for Parenteral and Enteral Nutrition (ASPEN) reported in 2022 that: Malnourished patients have 73% higher healthcare costs.

Their hospital stays are almost twice as long.

They’re more than twice as likely to be readmitted after discharge.

Even with these serious risks, only about half of the patients diagnosed with malnutrition get the treatment they need. It’s clear—we need to talk about malnutrition, raise awareness, and work together to improve care

SCREENING FOR MALNUTRITION IN HOSPITALS Malnutrition happens when your body doesn’t get the right amount of nutrients, calories, or protein it needs to stay healthy. It can affect anyone—infants, children, or adults—at any age. There are many reasons why someone might become malnourished.

Some people may not be able to consume enough nutrition, while others might have a health condition that makes it hard for their body to absorb or process nutrients properly.

Being malnourished can affect how you feel, how well you heal, and how often you might need medical care. Common problems associated with malnutrition include a weaker immune system, slow wound healing, increased risk of infection, muscle weakness (in adults), poor growth (in children), weight loss, and reduced quality of life.

Many healthcare organizations, including the Joint Commission, require hospitals to screen all patients for malnutrition within 24 hours of admission. When used correctly (as part of the hospital’s admission process), these screening tools can help catch nutrition problems early.

Most hospitals now use a short screening process to identify patients who might be at risk of malnutrition.

These screening tools typically include a few researchbased questions that help flag nutrition concerns If someone’s answers suggest they might be at risk, this signals the hospital to refer to a registered dietitian or other healthcare provider for additional nutrition assessment.

American Society for Parenteral and Enteral Nutrition. (2024, December). Nutrition screen, assessment, and diagnosis: Adults [PDF]. NutritionCare.org. Retrieved August 6, 2025, from https://nutritioncare.org/wp-content/uploads/2024/12/Nutrition-ScreenAssess-Diagnose-Adults.pdf

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Most hospitals now use a short screening process to identify patients who might be at risk of malnutrition. These screening tools typically include a few research-based questions that help flag nutrition concerns If someone’s answers suggest they might be at risk, this signals the hospital to refer to a registered dietitian or other healthcare provider for additional nutrition assessment.* Screening tools vary in format. An example of a commonly used tool, the Malnutrition Screening Tool (MST), is depicted below. Patients are asked a couple questions pertaining to weight loss and appetite that are scored based on severity. These individual scores are then added together. For this tool, a score of 2 or greater is considered “at risk of malnutrition.” This triggers the hospital to consult the dietitian or other specialist for nutrition assessment.

TEAM-BASED CARE: WHY IT MATTERS A coordinated, multidisciplinary team is essential for treating malnutrition. A multidisciplinary team includes healthcare professionals from different specialties who work together to create personalized care plans. By combining their expertise, they can address both the symptoms and root causes of malnutrition.

Decisions about nutrition—whether oral, tube, or IV—should be made together, based on the patient’s needs, medical history, nutritional status, digestive function, and overall goals.

As a patient or caregiver, you may need to take an active role in building your care team to support your specific needs. This may include specialists from different healthcare systems, which can make coordination more difficult. This is why your voice matters. Below are some tips to help.

Care Coordination Tips Start with Your Primary Care Provider (PCP): Your primary care provider can guide you to the right specialists Identify Your Health Needs: Think about all aspects of your health - medical, nutrition, mental, physical, and social Ask for Referrals: Providers can connect you with trusted specialists Include Support: Social workers or case managers can help with housing, finances, and system navigation Share Info: Keep your team in the loop so they can coordinate care

*In children and infants, the Screening Tool for the Assessment of Malnutrition in Pediatrics (STAMP), Pediatric Malnutrition Screening Tool (PMST), Pediatric Nutrition Screening Tool (PNST), the Pediatric Yorkhill Malnutrition Score (PYMS), and Screening Tool for Risk on Nutritional Status and Growth (STRONGKIDS) help identify risk factors. *

Quick action is key. Treating malnutrition early helps prevent serious health problems and improves recovery. Some people with malnutrition may need extra nutrition through high-calorie and/or protein drinks, specialized diets, enteral nutrition (tube feeding), and/or parenteral nutrition (IV nutrition). Others may already be using one or more of these supports but may need adjustments made to better meet their nutritional needs.

Keep Records: Track meds, test results, and notes to share when needed Use Coordinators: Hospitals may offer nurse navigators to connect your team Advocate: Ask questions, voice concerns, and request support

*For adults, the Malnutrition Screening Tool (MST), the Malnutrition Universal Screening Tool (MUST), the Mini Nutritional Assessment- Short Form (MNA-SF), Nutrition Risk Screening (NRS 2002), and Short Nutrition Assessment Questionnaire (SNAQ) are used in a variety of care settings.

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“

Nutrition support is not the responsibility of one person. It should be a team effort of shared responsibility.

LONG-TERM AND HOME NUTRITION CARE Compared to hospital-based care, nutrition support at home provides further challenges. Nutrition problems may not be screened for or even regularly asked about at medical follow-up visits. Therefore, in the home or long-term care setting, caregivers and patients play a leading role in identifying goals of care, monitoring nutrition intake, reporting symptoms or issues, and administering nutrition support(s).

Patients and caregivers are also crucial for ensuring that nutrition is considered a clinical priority and part of regular conversation and follow-up care. Therefore, it’s important to speak up and let nutritional concerns be heard.

Consider the case of a toddler named Liam, diagnosed with failure to thrive, due to underlying swallowing problems. At first, his nutritional needs were managed through high-calorie oral supplements, but he remained underweight with recurrent complications such as pneumonia. His pediatrician, concerned about the weight loss, referred him to a gastroenterologist, who placed a gastrostomy tube (Gtube) and recommended tube feeds.

Unfortunately, Liam had trouble tolerating his tube feeding with complaints of reflux, pain, and hiccuping. His mother called the gastroenterology office to report her concerns. Referrals were sent to specialists to collaborate on his care. After a team discussion—including a speech-language pathologist to assess swallowing, a dietitian to optimize his tube feeding, the pediatrician overseeing his care, and Liam’s mother—it was decided that a gastrojejunal tube (GJ-tube) would offer safer, better tolerated feeding.

This team approach allowed Liam to thrive, gaining weight and avoiding further hospitalization. This is a great example of the multidisciplinary team approach to malnutrition, with the patient/caregiver voice front and center.

TAKE HOME MESSAGE Patients and caregivers are essential partners in recognizing, treating, and managing malnutrition and need to be included in the multidisciplinary team. When healthcare providers listen and work together, care becomes more personalized and effective. A strong team—including doctors, dietitians, nurses, social workers, and others—can address both medical and social causes of malnutrition. This approach improves recovery and helps prevent further problems.

Patients and caregivers should feel confident speaking up and asking for help. Regular follow-up is key to staying healthy.

When issues arise, treatment should be timely and thorough.

Recovery from malnutrition takes teamwork, communication, and care focused on what’s best for the patient.

Multidisciplinary Nutrition Support Team: Primary Care Provider or Managing Physician; Specialists (Surgery, Gastroenterology, Oncology, Neurology, Wound Care, etc.); Registered Dietitian Nutritionist (RDN); Nurse or Nurse Practitioner; Pharmacist (especially for IV nutrition); Speech-Language Pathologist (for swallowing issues); Social Worker or Case Manager; Physical and/or Occupational Therapist ; Patient and Family/Caregiver

Want to learn more about malnutrition?

Check out ASPEN’s Malnutrition Resource Center Malnutrition Resources for Clinicians - ASPEN

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References ASPEN (American Society for Parenteral and Enteral Nutrition). (2022, August 17). Malnourished hospitalized patients continue to rise [Infographic]. NutritionCare.org. https://nutritioncare.org/wp-content/uploads/2024/12/Malnourished-Hospitalized-Patients-Continues-toRise.pdf American Society for Parenteral and Enteral Nutrition. (2022, September 14). Adult nutrition care pathway [PDF]. NutritionCare.org. Retrieved August 6, 2025, from https://nutritioncare.org/wp-content/uploads/2024/12/Adult-Nutrition-Pathway-9.14.22.pdf American Society for Parenteral and Enteral Nutrition. (2024, December). Nutrition screen, assessment, and diagnosis: Adults [PDF].

NutritionCare.org. Retrieved August 6, 2025, from https://nutritioncare.org/wp-content/uploads/2024/12/Nutrition-Screen-Assess-DiagnoseAdults.pdf GLIM Criteria for the Diagnosis of Malnutrition: A Consensus Report from the Global Clinical Nutrition Community JPEN J Parenter Enteral Nutr. 2019 Jan;43(1):32-40.

Guenter, P., Abdelhadi, R., Anthony, P., et al. (2022, August 17). Malnourished hospitalized patients continue to rise: Prevalence of malnutrition diagnoses in discharged patients, United States, 2008–2018. American Society for Parenteral and Enteral Nutrition (ASPEN). https://nutritioncare.org/wp-content/uploads/2024/12/Malnourished-Hospitalized-Patients-Continues-to-Rise.pdf Sánchez-Rodríguez, Dolores, et al. "ASPEN-AND-ESPEN: A postacute-care comparison of the basic definition of malnutrition from the American Society of Parenteral and Enteral Nutrition and Academy of Nutrition and Dietetics with the European Society for Clinical Nutrition and Metabolism definition." Clinical Nutrition 38.1 (2019): 297-302.

Vest, M. T., Papas, M. A., Shapero, M., McGraw, P., Capizzi, A., & Jurkovitz, C. (2018). Characteristics and outcomes of adult inpatients with malnutrition. Journal of Parenteral and Enteral Nutrition, 42(6), 1009-1016.

World Health Organization, & United Nations Children's Fund. (2020). Levels and trends in malnutrition: key findings of the 2020 edition.

UNICEF/WHO/World Bank Group joint malnutrition estimates. World Health Organization.

Cardinal Health™ Kangaroo OMNI™ Enteral Feeding Pump

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OLEY POLICY & ADVOCACY 2025 UPDATE Oley defines advocacy as: “ Be the voice to, of, and for the people on home nutrition therapy and their caregivers. ”

A

dvocacy means something different to everyone. For some, it means speaking up for yourself. For others, it means calling your state representative or even a trip to Washington, D.C. Oley defines advocacy as: “Be the voice to, of, and for the people on home nutrition therapy and their caregivers.” · To: Our educational focus — written materials, the Lifeline Letter, the website, webinars, and regional/annual conferences. · Of: Connecting members of our community with each other and with resources. · For: Behind-the-scenes work in policy, legislation, regulatory, and system-level changes.

This year, Oley has been hard at work making sure that the voices of patients and caregivers living with home parenteral and enteral nutrition are heard where decisions are made. From Medicare to the FDA, and from coalition halls to Capitol Hill, we’ve worked to highlight the real-world challenges our community faces. Here is a snapshot and summary of the policy and advocacy efforts we’ve undertaken on your behalf and the impact they are already having.

WHY IT MATTERS Oley’s behind-the-scenes advocacy brings together patients, caregivers, clinicians, and policymakers to create real, positive change in home nutrition support.

By actively participating in committees, coalitions, summits, and legislative efforts, we make sure the voices and experiences of patients guide decisions about access, safety, and care standards.

These efforts lead to stronger policies, more reliable drug and device supply chains, better-informed clinicians, and greater support for families navigating complex care—helping every patient feel seen, heard, and cared for.

Every conversation, committee meeting, and panel we join is a step forward for our community. Thanks to your support, Oley continues to lift the voices of patients and caregivers, shape policies, and improve care nationwide.

Stay connected, stay informed, and stay involved.

Together, we are building a stronger and safer future for everyone on home nutrition support. Soon you’ll be able to explore our new dashboard showcasing Oley’s activities and highlighting opportunities for you to get involved and add your voice.

OLEY 2025 POLICY & ADVOCACY EFFORTS http://oley.org/2025advocacy

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A LETTER FROM OUR INCOMING PRESIDENT // LISA EPP, RDN, LD

D

ear Oley Community, I am honored to be stepping into the role of President of the Board for Oley. It’s a privilege to join such a strong and supportive community of individuals, families, caregivers and clinicians who understand the unique challenges and triumphs with nutrition support.

My first introduction to Oley came with my own shortcomings as a dietitian working with patients on home tube feeding. One of my patients introduced me to Oley and this wonderful group of people.

From then on I have deeply benefited from the connections and community I have seen here.

It was great to see so many of you at our annual conference in June.

We are an organization that is growing and thriving, thanks to our members. It’s exciting to see new resources on our website, new events (both in person and virtual) as well as partnerships with industry. I know together we can continue to grow our community and continue to help more individuals.

I do want to share my thanks to Dr. David Mercer and the entire Oley board as well as the staff and volunteers for their dedicated service, leadership and countless contributions that have helped shape Oley into what it is today. For the first time in years we have the resources to continue to grow as an organization.

As we look ahead to an exciting year my goal is to create more opportunities for connection within this wonderful community. I would love to see how we can use artificial intelligence (AI) to help create tools that serve both consumers and clinicians alike. I would also like to see our attendance at the annual conference continue to grow. It is so heart warming to see so many personal connections being made at the events. I especially love the dancing and karaoke night.

I also look forward to Oley being able to have more involvement in advocacy, including healthcare legislation in a robust way. As the board meets in November for our strategic planning, these are the items that will be at the forefront of conversation. I would love to see you all at our events in the coming year. First, the board would love to hear from you at our Town Hall Meeting on October 21.

Being able to hear from Oley members is the best way to help us shape our future. I would also love to see you at webinars, participating in surveys, volunteering and of course at our annual conference next summer in Madison Wisconsin.

Thanks again for being such an important part of this community. I am really looking forward to what we can accomplish together.

Lisa Epp

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UPCOMING EVENTS September 22, 8:00 PM ET Interested in Presenting at Oley 2026?

Submit your educational session abstract via our Speaker Portal at: https://oley2026.vfairs.com/en/call-forspeakers September 30, 7:00 PM ET Community Connections (webinar) Register at: https://oley.org/page/SupportGroups October 12-18 - HPN Awareness Week Oley's HPN Awareness Week 2025, proudly presented by: Fresenius Kabi Story Time: Virtual Kidz Klub Activity Sponsored by MIC-KEY Cares Navigating the HPN Roadmap: From First Infusion to Long-Term Management Sponsored by Nutrishare From Prescription to Infusion: Unpacking How Home Parenteral Nutrition Gets to You Sponsored by Amerita The Lipid Line-Up: Understanding the Differences in Parenteral Formulations Sponsored by Fresenius Kabi Life on HPN: Voices, Stories, and Experiences - Oley’s Consumer Conversations 2025 Sponsored by AvevoRx Nutrition

Apply at: https://f.mtr.cool/bxjdxnogkh

To register visit: https://oley.org/page/hpn

Lifeline Letter 24

THANK YOU, CORPORATE PARTNERS Join us in thanking the companies that support Oley year-round. Below, we’re pleased to spotlight a few of our corporate contributors and share their messages with you. To see the full list of our valued corporate partners, please visit: oley.org/page/PartnerShowcase.

NEW PARTNER

AvevoRx Nutrition is a national provider of home parenteral nutrition services, offering personalized treatment for consumers with complex gastrointestinal conditions. Our team of dietitians, nurses, and pharmacists are seasoned experts in the home nutrition support and intestinal failure communities, committed to providing consumers with the service they deserve. Compassion, expertise and exceptional service are the cornerstones of our nutrition program-empowering consumers to live independently and achieve their highest quality of life. https://avevorx.com/nutrition/

Nestle Health Science is a leader in the science of nutrition, committed to redefining the management of health. We offer an extensive portfolio of science-based consumer health, medical nutrition, pharmaceutical therapies, and vitamin and supplement brands.

Headquartered in Switzerland, we have more than 7,000 employees around the world, with products available in more than 160 countries. https://www.nestlehealthscience.us/

Cardinal Health is a global healthcare services and products company providing customized solutions for hospitals, healthcare systems, pharmacies, ambulatory surgery centers, clinical laboratories, physician offices and patients in the home.

The Cardinal Health™ Kangaroo™ Feeding Portfolio offers a safe, innovative and complete line of enteral feeding products for use across the continuum of care. The Kangaroo™ Brand has a long history of providing reliable and trusted products for clinicians and caregivers to optimize clinical efficiency. https://www.cardinalhealth.com

The Oley Foundation’s longest-standing partner and your go-to provider for comprehensive nutrition care across all 50 states. With over 40 years of experience, you can rest easy knowing there’s a team of nutrition support experts in your corner. At Coram, we pride ourselves on our clinical excellence and compassionate support we provide to the home nutrition support community. Coramhc.com

Kate Farms offers nutritionally advanced formulas designed for both tube feeding and oral use. They are available nationally and eligible for insurance coverage. Kate Farms products are Made for Tolerance with highquality, science- backed, organic ingredients and without common allergens or artificial sweeteners, or flavors. Visit www.katefarmsmedical.com and request samples.

Zealand Pharma is a biotechnology company working to tackle some of today’s greatest healthcare challenges with peptide therapeutics. We leverage our 25-year heritage in peptide development to create transformative therapies that put patients first and support long-term health outcomes for a variety of disease areas including gastrointestinal and metabolic disorders, such as short bowel syndrome. Founded and headquartered in Copenhagen, Denmark, with operations in the U.S., Zealand has advanced more than 10 drug candidates into clinical development, two of which have reached the market, and three of which are in late-stage development. For more information about Zealand’s business and activities, please visit www.zealandpharma.com.

For over 20 years, Moog Medical has been designing proven, reliable, and easy-to-use infusion pumps (CURLIN) and enteral feeding pumps (Infinity) that provide precise and steady fluid delivery. Our industry-leading clinical and customer support teams are available to assist customers and patients 24 hours a day, 7 days per week.

Moogmedical.com

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THANK YOU CORPORATE PARTNERS