LifelineLetter_Fall_2025 by OleyFoundation

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’SSTORY

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

LIVE: OCTOBER 21

7:00PM - 8:00PM ET To register visit

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

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.

OLEY FOUNDATION 2025-2030 STRATEGIC PLANNING VIRTUAL TOWNHALL

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

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:

Fall 2025 Volume 48, No. 1

Phone: (518) 262- 5079

Email: info@oley.org oley.org

Publisher:

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

We’re excited to share how awesome and structured our Oley Staff Team is and it just got even better! Please join us in welcoming Sam Gore and Amayah White

Sam Gore

IT SUPPORT SPECIALIST

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

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 table. He was also known as Mr. Freaking Oley. Jeff and his family have been long-time members of the Oley Foundation His daughter Alicia was diagnosed with hypoganglionosis and had been on TPN since birth in March 1995. Alicia had given up attending her own high school graduation to attend the 2003 Oley conference in St. Augustine, FL.

Sadly, Alicia passed away in 2013 and Jeff and his wife Rose took a step back for a few years from the 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

Jeff was set to attend the 2025 annual Oley conference and take his seat at the registration table once again, unfortunately he passed away on May 15, 2025 This left a huge hole in so many people’s hearts and sitting at the registration table this year without my friend was vastly different.

The future is never certain, and we should embrace the friends we meet along the way with gratitude Thank you,

On behalf of Lynda's family, we want to share Lynda Bosworth passed away, June 11, 2025 at the age of 82. She spent 3 months in hospice and passed away peacefully. Lynda was diagnosed with Short Bowel Syndrome in her early 70's after a sudden hiking accident. She received Parenteral Nutrition and then received Gattex and lived well eating and drinking to her heart's desire independent of parenteral support - a personal goal she always had.

Her life is marked by such vivacious spirit, mentorship, and sassy support! She was the ring leader of our Gutsy Girls with Good for Nothing Gutscoining the term, bringing us all together checking in regularly. Lynda was a frequent visitor and speaker at the Oley Conference in past years Her sister, Bonnie attended her first Oley conference without Lynda shortly after Lynda was diagnosed with SBS eager to learn everything she could to help her sister

IN LOVING MEMORY

Lynda Bosworth

REMEMBERING WITH LOVE AND GRATITUDE

The support and education they received changed their lives. Lynda has immense love and care for her Belly sisters and peers met through Oley. It is where Swapna met Lynda in 2016 in Long Beach, CA. Lynda was one of the first Takeda Gattex ambassadors and enjoyed speaking to clinicians and patients about her well-being on Gattex, always eager to offer more support to who needed it. Swapna has already spoken with Takeda. They decided to honor Lynda with a slide and pre-approved remarks at their booth.

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. ”

During our August Community Connections meeting, we welcomed several new members, including 21-year-old Miranda Ritter. Miranda lives on home parenteral nutrition (PN) for nutrition support and uses a wheelchair. As the meeting was wrapping up, Miranda reached out to me asking if I could connect her with someone for one-on-one support outside of the group Community Connections is Oley’s monthly virtual support group which focuses on sharing tips, experiences, and encouragement for living well with nutritional support But sometimes, a personal peer connection can make all the difference

The next day, Miranda and I connected by email. I learned more about her such as where she’s from, her hobbies, and a little about her health journey.

Within 24 hours, I heard back from Oley member Shaylee Hunter who enthusiastically offered to connect with Miranda. Shaylee also lives in Utah, just like Miranda, which made this pairing extra special

While most of our peer matches meet virtually, it’s rare and exciting to connect with members who can meet in person A few days later, Shaylee shared that she and Miranda had met and had an amazing time getting to know each other. It was incredibly rewarding to hear this news

Many of our members feel uncertain about what their future might look like Connecting them with peers who can show firsthand that a full, meaningful life is possible on nutrition support is one of the most powerful things we can do Peer-to-peer matching isn’t just a program, it’s a lifeline, and it’s an essential part of how we help members navigate their journeys with the right education, support, and hope.

Join us every last Tuesday of the month for Community Connections

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

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

THIS IS EDUCATION THAT TRULY EMPOWERS

The Oley 2025 Conference was an empowering week filled with connection, learning, and plenty of fun. With 494 attendees including 209 first-timers the energy was vibrant and welcoming. Breakout sessions covered everything from medical updates and nutrition research to caregiving strategies and emotional wellness, blending expert knowledge with lived experience. Patients, caregivers, and professionals came together in meaningful dialogue where every voice mattered Beyond learning, the week was filled with joy and community spirit. Pirate costumes sparked laughter, the fashion show celebrated creativity and courage, and karaoke night brought everyone together in song and cheer

The Experience Expo featured 51 exhibitors offering hands-on solutions, resources, and innovations to support daily life.

Attendees left with practical tools and valuable industry connections. Thanks to 64 travel grants, we were able to welcome voices from across 32 states, Washington DC, three Canadian provinces, and four countries making this year one of our most inclusive and global gatherings yet. From start to finish, it was a week of empowerment, learning, and joy, filled with friendships, knowledge, and memories that will last until we meet again next year.

This year ’ s Kidz Klub was another one for the books, with a record of 50 children bringing joy, laughter, and connection For many, it was more than just a program it was a chance to simply play, belong, and make friends who understand their world.

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.

Attending the Oley Annual Conference in person for the first time was a powerful and inspiring experience. From the moment I arrived, I was immersed in a vibrant community of patients, caregivers, healthcare professionals, and consumer advocates, all brought together by a shared commitment to improving the lives of those who rely on nutrition support.

Engaging face-to-face with individuals who live with 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

A FIRST TIME EXPERIENCE

// KALEE EICHELBERGER

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

What stood out most, though, was the strength of the Oley community itself a diverse, passionate network united not just by medical needs, but by empathy, shared experience, and the drive to make a difference. From our fashion show to our educational sessions, attending in person brought that energy to life in a way that can’t be replicated elsewhere.

SUPPORTFORLIVINGWITHAFEEDINGTUBE

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.

WHAT WE CELEBRATE

Our awards highlight the many ways people make a difference:

// 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

CELEBRATING

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.

WHY IT MATTERS

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.

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.

I

WINNERS

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 undershirtso her abdomen is not exposed.

HEN HERO AWARD

// KATIE MCMULLEN

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

HPN HERO AWARD

// SHAYLEE RAYE

RISING STAR AWARD

Over the years I have done gymnastics, 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

// MADELYN MORRIS

Sponsored by: Abbott

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

OLEY AND ANGELS FOR CHANGE — A PARTNERSHIP IN ACTION

// BETH GORE

Over 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.

On 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.

OUR VOICE AT FDA

Advocacy in Action

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

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?

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.

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

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

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

Keep Records:

Track meds, test results, and notes to share when needed

Use Coordinators:

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.

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

“

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

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

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

Supportsyour individualnutritiongoalswiththickformula* administration, 30dayfeedinghistoryviewandnightmode capability.

* Thick formula: Enteral fluids of smooth consistency that would be categorized as level 2, 3 or 4 Drinks within the IDDSI framework

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. ”

Advocacy 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.

WHY IT MATTERS

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.

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://oleyorg/2025advocacy

A LETTER FROM OUR INCOMING PRESIDENT

// LISA EPP, RDN, LD

Dear 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.

LisaEpp

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

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

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

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.

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

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

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

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

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

NEW PARTNER