LifelineLetter, Summer 2025

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Healing Beyond Medicine

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The Making of Our New Logo

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Oley at ASPEN

A quarterly publication of the Oley Foundation

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Conference Know Before You Go

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Introducing Somos Oley

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Research Opportunity

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, CNSC, CHES Manager of National Advocacy: Andrea Taylor, RD, CNSC Operations Manager: Cathy Harrington Operations Coordinator: Melissa Hansen Operations Specialist: Whitney Kramer Youth Program Coordinator: Jade Lusk Digital Marketing Coordinator: Heather Byrtus Community Engagement Coordinator: Vincent Rosche Community Care Coordinator: Shakira Valentin 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

Oley Staff Updates Kidz Klub Camp at Primed and Ready to Grow Understanding the Financial Impact Survey on Medication Administration Oley at ASPEN: Amplifying the Patient Voice You Can Make a Difference Understanding Choline Deficiency 2025 Calendar & Events Corporate Partners

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 customers on home IV nutrition and tube feeding overcome challlenges, 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 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.

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.

@the_oley_foundation

@the_oley_foundation

@theoleyfoundation

@TheOleyFoundation

LifelineLetter Summer 2025 - Volume 47, No. 1 Phone: (518) 262-5079 Email: info@oley.org oley.org

Publisher:

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

©2025 The Oley Foundation. All rights reserved.

The information provided is for educational purposes only and is not intended as medical advice.

Although clinical information is peer reviewed, you are advised to consult with your healthcare team before making any changes to your care plan.

Whitney Kramer Operations Specialist Whitney is detail-driven with a talent for streamlining workflows and enhancing team coordination. She thrives in identifying and crafting practical, creative solutions.

With a strong background in cross-departmental collaboration as an executive administrative assistant, she ensures smooth and effective operations. Whitney is passionate about supporting The Oley Foundation’s mission of enriching the lives of those on home IV nutrition.

Heather Byrtus Digital Marketing Coordinator Heather brings a deep passion for connection, advocacy, and empowerment to her role at The Oley Foundation. With a strong background in social media strategy, Heather is committed to using digital platforms to reach individuals and communities that are often overlooked or hard to access.

Her work centers on fostering inclusive communication and creating meaningful content that informs, supports, and inspires. Heather is especially dedicated to supporting caregivers and helping individuals advocate for themselves.

She believes that everyone deserves to be heard and equipped with the tools to navigate their journeys with confidence. Her empathetic approach and commitment to advocacy align with The Oley Foundation’s mission to improve the quality of life for those requiring home intravenous nutrition and tube feeding. Through her work, Heather strives to create spaces—both online and off— where people feel seen, supported, and empowered.

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We are thrilled to introduce two new staff members to our incredible team!

Whitney Kramer is our new Operations Specialist. She will be overseeing and supporting our everyday behind the scenes operations with excellence.

Heather Byrtus is our new Digital Marketing Coordinator. She will be creating content for our media channels that help support, encourage, and give resources to our community.

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Oley Staff Updates

The Oley Foundation Conference is almost here, and we couldn’t be more excited to welcome you. With so much planned — from educational sessions and hands-on workshops to networking opportunities and community gatherings —it’s shaping up to be an unforgettable event. To help you get the most out of your experience, we’ve put together a helpful resource to make sure you’re in the know before you go. Whether this is your first conference or you’re a returning attendee, our "Know Before You Go Guide" has everything you need to feel prepared and confident, including important logistics, Hotel highlights, and helpful tips. We can’t wait to see you there. Don’t forget to tag us on social media and share your conference experience.

Know Before You Go Guide The Attendee Toolkit “I’M ATTENDING” Graphic Visit http:/Oley.org/2025resources for all of this information!

What Started as a Picnic Has Grown into Our 40th Annual Conference send us your throwback conference photos to info@oley.org

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Camp Kidz Klub Hours at Conference Wednesday – 8:45am-12:45pm; 1:30-4:45pm Thursday – 8:45am-12:45pm; 1:30-4:45pm Friday – 8:45am-12:00pm

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Kidz Klub is a fun, safe place where kids, age 4-12, enjoy crafts, games, music, and friendship while parents attend sessions. This year we have special visitors! A local Charleston artist is coming for a super fun craft session, Sponsored by Takeda. The South Carolina Aquarium will be bringing some of their amazing creatures, Sponsored by Avanos.

Plus, don't miss out on Jammin Jammies! Our PJ movie night, Sponsored by Abbott.

Are you currently receiving parenteral nutrition for intestinal failure?

Has your doctor told you that you have high liver enzymes and/or bilirubin?

TAKE THE INITIATIVE! The Initiative Trial is a new clinical study evaluating the effectiveness of a potential oral treatment that may help patients living with the condition known as parenteral nutrition-associated liver disease (PNALD) – also known as intestinal failure-associated liver disease (IFALD).

The Initiative Trial is now open for enrollment.

Speak to your doctor and find out if you are eligible to participate.

To learn more and find a participating trial location, visit InitiativeTrial.com

NorthSea Therapeutics is a clinical-stage biotech company developing first-in-class, oral, structurally engineered fatty acid therapeutics. www.northseatherapeutics.com

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HEALING BEYOND MEDICINE: THE POWER OF COMPLEMENTARY THERAPIES IN PATIENT CARE Kalee Eichelberger | MS, RD, LD/N, CNSC, CHES Manager of Education, Oley Foundation

Complementary therapies in medicine refer to a range of treatments used alongside conventional medical care to support overall health and well-being, often focusing on holistic approaches that address the mind, body, and spirit. In-hospital examples include art, music, play, and pet therapies. While not substitutes for medical treatment, these therapies can work alongside traditional healthcare to enhance well-being and sense of creativity; reduce stress, anxiety and reported levels of pain; and improve overall quality of life for some patients. For children and adults alike, engaging with animals, discovering outlets for expression, or listening to music can foster a sense of comfort, agency, and Painting by prior HPEN consumer, entitled “Tree of Life”

connection during challenging times. As research continues to support their positive impact, these therapies are becoming valuable components of holistic

Art Therapy

patient care.

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Art therapy, as described by the British Association of Art Therapists , is a type of psychotherapy that uses art materials as a way for individuals to express themselves and communicate. This type of therapy is generally led by a mental health professional with specialized training in art therapy and can be used in a wide variety of settings, including hospitals, schools, mental health facilities, rehabilitation centers, and private practices, as well as in community settings. Art therapy does not require people to have any prior artistic experience or skill. Rather than focusing on the aesthetic quality or interpretation of the artwork, the aim is to support personal growth and emotional development by exploring feelings and experiences through creative expression even at the hospital bedside. Examples include painting, drawing, and tailored crafting projects. See below for a beautiful painting completed by a previous nutrition support consumer.

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HEALING BEYOND MEDICINE: THE POWER OF COMPLEMENTARY THERAPIES IN PATIENT CARE Kalee Eichelberger | MS, RD, LD/N, CNSC, CHES Manager of Education, Oley Foundation

Music Therapy

Music therapy involves personalized music-based interventions

designed and delivered by a trained and certified music therapist.4 Unlike “music medicine,” which usually involves passive listening to music provided by healthcare staff, music therapy is an active, therapeutic process tailored to individual needs. Techniques may include singing, songwriting, improvisation, guided or tailored music listening, and playing instruments. These methods are used to help patients manage pain, reduce anxiety, improve mood, and support emotional expression and communication in a structured, therapeutic setting.

Play Therapy Play therapy is a type of psychotherapy in which a trained therapist uses play as a tool to help individuals—primarily children, though sometimes adults—explore and 5 process complex emotions and experiences. Child life therapists are more often employed to help with implementing various strategies, including play, education, and expressive activities, to help children understand and cope with their medical situations.6 Play therapy provides a safe and supportive environment where people can express themselves in ways that go beyond verbal communication. Through activities such as role-playing, drawing, or using toys, individuals can work through issues like anxiety, depression, behavioral challenges, and trauma in a developmentally appropriate and therapeutic manner.

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HEALING BEYOND MEDICINE: THE POWER OF COMPLEMENTARY THERAPIES IN PATIENT CARE Kalee Eichelberger | MS, RD, LD/N, CNSC, CHES Manager of Education, Oley Foundation

Pet Therapy Pet therapy, also known as animal-assisted therapy (AAT), involves using animals, typically dogs, but also horses, cats, and other animals, to help individuals with anxiety, stress, 7

depression, and social functioning To ensure safety, animals must be well-trained, vaccinated, and screened for appropriate behavior and sessions should be supervised by professionals to monitor pet behavior. In a hospital setting, maintaining cleanliness during pet therapy involves strict hygiene protocols, such as sanitizing hands before and after contact, ensuring animals are groomed and healthy, and limiting visits to non-immunocompromised patients (that are medically cleared) in designated, sanitized areas.

As an example, the Oley staff and community would like to highlight some of our own “selfdirected pet therapy” friends, below!

How to Advocate for Complementary Therapies Many of these practices can be applied in home or outpatient settings. Applying complementary therapy practices at home can be a great way to support your overall well-being, reduce stress, and enhance recovery. You can search local hospitals, professional organizations for specific therapies, and online for qualified practitioners. However, it's important to consult your medical provider to help with recommendations and ensure the therapies you choose are safe, effective, and appropriate for your individual health needs (i.e. compromised immune systems, central line precautions, allergies, etc.)

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HEALING BEYOND MEDICINE: THE POWER OF COMPLEMENTARY THERAPIES IN PATIENT CARE Kalee Eichelberger | MS, RD, LD/N, CNSC, CHES Manager of Education, Oley Foundation

If you're interested in accessing complementary therapies while in the hospital—such as art therapy, music therapy, pet therapy, etc. —start by speaking with your nurse, doctor, or care team. Many hospitals have integrative medicine departments or offer specific services designed to support your emotional and physical well-being during treatment. Ask if a referral is needed or if the service is available on your unit. In some cases, these therapies are included in your care plan, while others may require special scheduling or approval.

Don’t hesitate to advocate for your needs and explore options that could enhance your healing experience.

References Goren, Katherine, et al. "The impact of music, play, and pet therapies in managing pain and anxiety in paediatric patients in hospital: a rapid systematic review." Paediatrics & Child Health 28.4 (2023): 218-224.

Gore, Emily, et al. "The therapeutic potential of bedside art observation in hematologic cancer inpatients: a randomized controlled pilot study." Supportive Care in Cancer (2022): 1-8.

Hogan, Susan. "The art therapy continuum: A useful tool for envisaging the diversity of practice in British art therapy."

International Journal of Art Therapy 14.1 (2009): 29-37.

De Witte, Martina, et al. "Music therapy for stress reduction: a systematic review and meta-analysis." Health psychology review 16.1 (2022): 134-159.

Gupta, Nihit, et al. "Play therapy as effective options for school-age children with emotional and behavioral problems: A case series." Cureus 15.6 (2023).

Rosenblatt, Audrey, et al. "Child life specialist services, practice, and utilization across health care: a scoping review." JBI evidence synthesis 22.7 (2024): 1303-1328.

Coakley, Amanda Bulette, and Ellen K. Mahoney. "Creating a therapeutic and healing environment with a pet therapy program." Complementary therapies in clinical practice 15.3 (2009): 141-146.

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INTRODUCING SOMOS OLEY – WE ARE OLEY! One of Oley’s strategic pillars is to build community. We know we can’t be everything to everyone—but we do listen. And we have been listening closely to what you, our community, have told us about a huge need.

We’re proud to announce a new program: Somos Oley (which means “We are Oley” in Spanish)! This name was chosen by the Spanish-speaking Oley community—and it was the clear favorite. The logo was designed by a long-time Oley community member who is also a patient on nutrition support.

WHAT IS THE SOMOS OLEY PROGRAM?

WANT TO VOLUNTEER?

If you speak Spanish and want to help with translation or reviewing resources, we’d love your help! We need both clinicians and those with lived experience. For our Volunteers: Patient & Caregiver Volunteer Form Clinical Volunteer Form

Many people told us that it’s hard to find good, easy-to-understand information about nutrition support in Spanish. That’s why we’ve been taking real steps to better support our Spanish-speaking community:

COMING TO THE OLEY CONFERENCE?

We hired multiple bilingual staff We’ve added a Spanish-language option to our phone system We have a person who speaks Spanish who will return emails from info@oley.org All of our new educational materials are now created in both English and Spanish We want these materials to be clinically accurate and respectful of your lived experience. First, the

Join us for the very first in-person Somos Oley meet-up!

It’s a chance to connect with others in the Spanishspeaking community, share your ideas, and help shape what this program becomes. Please join us on June 17th, 5:30pm - 6:30pm in Meeting Room 3.

We’re so excited to keep building this space – for you and with you.

information is reviewed by our English-speaking medical experts and people living on nutrition support. Then, it’s reviewed again—by Spanishspeaking clinicians and patients—to make sure nothing is lost in translation.

Para leer el artículo en español, por favor use este enlace.

Oley.org/somosarticle

focus on Gastroenterology and Nutrition Support. During my career, I have seen some of the challenges that people and families face when prescribed tube feeds or IV nutrition.

I have learned to talk to my patients about challenges with co-pays, prior authorizations, coverage for nursing services or medical tests needed to watch their nutrition therapy. However, ensuring coverage for formula, supplies, and the services they need has not been an easy task. I have glimpsed the emotional and mental burden of possibly losing access to their intravenous line, feeding tube, formula, or supplies. The uncertainty of coverage has been a common theme affecting the people I talk to.

In recent years, I presented to healthcare providers about malnutrition and addressing social drivers of health (food security, health literacy, environment, and community resources). During my review of information through multiple sources (books, journals, websites, etc.), I found that we do not know how many people struggle with financial issues or feel emotionally vulnerable due to the cost of tube feeds or IV nutrition. I also realized a gap in understanding that IV and tube feeding formulas are the food & nutrition for people who receive these life-saving therapies. Preparing for these talks set me on a path of action.

I developed this survey to obtain information, and a better understanding of how often patients and families struggle with financial needs and/or feel affected in their mental health. Our study aims to understand how the cost of IV nutrition or tube feeds affects families and the ways they cope. With the information gathered, our team hopes to: Increase awareness among healthcare providers about the impact of specialized nutrition support on patients and households.

Obtain a general idea of how the nutrition support community truly feels about the cost of therapy and their overall wellness.

Gather data to support advocacy efforts for coverage of these specialized nutrition therapies.

Find the resources that patients and families need to thrive and reduce health disparities.

I am grateful to the patients and caregivers who share with me their wishes, concerns, and struggles. Please consider taking part in the survey and let your voice be heard! Help us understand your needs and support you in achieving your highest level of health.

With gratitude, Gabriela Gardner, PSM, RD-AP, LD, CNSC This survey can be taken in English or Spanish. In order to take or pass along the survey please follow the link. http://redcap.link/nutritiontherapy2025

Research Announcement A research study is under way to better understand the challenges feeding tube users face in assessing essential medication administration products such as syringes and bottle adapters This anonymous survey aims to quantify these challenges and share findings with key steak-holders including retail pharmacies, hospitals, device manufacturers, distributors, ISMP, CMS, the FDA, and others. The goal is to drive action towards accessibility and enhancing quality of care.

Take the survey here: www.surveymonkey.com/r/NVZJ92T

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Since my first job as a hospital dietitian, I knew I wanted to be involved in the care of people who need tube feeds or IV nutrition. I am a Dietitian with a

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UNDERSTANDING THE FINANCIAL IMPACT AND WELLBEING OF FAMILIES WITH MEMBERS WHO DEPEND ON NUTRITION SUPPORT

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THE MAKING OF A LOGO, BEHIND THE SCENES This is where we started

Let’s be honest—Oley’s old logo was fine. But we kept hearing the same thing: “It’s hard to tell what Oley does just by looking at it.” So, we added the tagline: “a home nutrition therapy community and advocacy group.” Helpful, but definitely a mouthful. Eventually it was time to rebrand.

The New OLEY Logo

First step? Hire a professional agency. These folks knew their stuff—from interviewing community members to exploring color theory. They did their homework. The result? A sleek, modern logo that worked across browsers and devices and even passed color-blind accessibility tests. There was just one problem. When we shared it with staff, board members, and folks in the community… it didn’t feel like Oley. So, we went back to square one.

One of our graphic designers started fresh. That version got us thinking in the right direction. We liked the circle, it’s like an “O”. We liked the tubing and the word at the bottom.

Then a staff member hand-sketched a version. We thought: What if, instead of “foundation,” the logo simply said “nutrition support”? What if we showed a house with tubing integrated into the design? That felt closer to our brand.

From there, it probably had 50+ iterations

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THE MAKING OF A LOGO, BEHIND THE SCENES We built focus groups: longtime Oley supporters, brand-new community members, clinicians, people on nutrition support, and even folks who’d never heard of us. Each version got reviewed, critiqued, revised. Through all of it, we kept circling back to that hand-drawn concept. It was simple. It was clear. It said what we needed it to say: Oley = home nutrition support. Then came this version.

Instantly, it was the favorite in every focus group.

It represents both enteral and parenteral nutrition. The tubing is part of the house and showed care. One participant said, “In other versions, the nutrition support was in the house. But in this one, it’s part of the house. It’s centered, it’s included.” Another shared, “I love how you can’t tell where the house ends and the tubing or the love begins.” Next challenge: color scheme. For some reason, we all kept gravitating back to our 2024 conference branding.

So, we pulled those colors into the new logo—and voilà.One thing we love most? It’s modular. We can use the circular version, a horizontal format, just the icon, black-and-white, grayscale—whatever is needed. And here’s the best part: This logo was designed start to finish by members of the Oley community—including people on nutrition support themselves. We hope you love it as much as we do.

Because in one simple image, it says everything: Oley is home nutrition support.

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 Page 2

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OLEY AT ASPEN: AMPLIFYING THE PATIENT VOICE

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KALEE EICHELBERGER, MS, RD, LD/N, CNSC, CHES | MANAGER OF EDUCATION

Oley was proud to have a strong presence at this year’s ASPEN 2025 Nutrition Science & Practice Conference.

Staff, board members, and volunteers attended in person, engaging with clinicians, researchers, consumers, and industry leaders. Our booth in the expo hall served as a hub for conversation, connection, and collaboration, reinforcing the vital role of the patient community in clinical care and research.

For the fourth year in a row, Oley had the privilege of leading the opening symposium on the topic, Standardizing the Deviation: When “One-Size-Fits-All” Harms Some. The session emphasized the need for tailored protocols for high-risk patients- particularly those on parenteral nutrition- when transitioning between home and hospital.

Standard practices like default IV fluids or incomplete medication reviews can be dangerous for these individuals. The presentation challenged healthcare professionals to rethink rigid protocols and consider developing "standardized deviations" to safeguard patient outcomes.

We were also thrilled to host our first inperson regional event since before COVID in Columbus, OH, with over 100 people registered! Sessions covered critical topics like Patient Education and Research, Navigating Malnutrition, Blenderized Tube Feeding, and Navigating Home Tube Feeding- Advocating for Yourself. Reuniting the community face-to-face was a powerful reminder of the importance of connection, education, and advocacy.

A special thanks to our sponsors—Takeda, Kate Farms, Cardinal Health, and B. Braun

Missed it? Recordings of both the symposium and regional presentations will be made available soon on our YouTube channel, @TheOleyFoundation, and oley.org/webinars

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Whether you’re a patient on home nutrition support, a caregiver, or part of a care team, you know how many challenges come with it. From dealing with insurance, ordering supplies, working with different companies, or navigating the healthcare system—it can all feel overwhelming and discouraging.

But change is possible. If you stay persistent and connect with the right people, you can help improve these systems. Here’s how I helped advocate for the addition of commercial blenderized tube feeding formulas to Florida’s WIC (Women, Infants, and Children) program. (WIC is a government program that supports low-income pregnant women, new moms, and young children (under age 5) with healthy food, baby formula, nutrition education, and help connecting to healthcare and other services.)

How it started

In October 2023, I had just finished working on a research project looking at the nutrition make-up of blenderized tube feedings. I was talking to my dietetic intern about how helpful these formulas can be for kids and families. But we also talked about how these formulas weren’t included in Florida’s WIC program.

That’s a big deal—because if a doctor prescribes one of these formulas and it’s not on the WIC list, the family has to go through a long and confusing process. WIC has to fill out a denial form, then the doctor has to sign it, and only then can the family send it to the insurance company. This can cause long delays or make it impossible for some families to get the formula their child needs.

Some doctors and clinics don’t even know how this process works, or don’t have the staff to help families through it. That means kids can go without the right nutrition—just because of red tape.

Taking action

I decided to write a letter to the Florida Department of Health, sharing research and explaining why these blenderized formulas are so helpful. I also met with my local WIC director, who was excited to support the effort and agreed to send the letter to the state level.

To strengthen the message, I reached out to other pediatric dietitians and GI doctors across Florida. I asked them to sign copies of the letter, and I sent them all to the WIC director in Miami-Dade County, who passed them on to the state.

That year, I found out the WIC contract wasn’t up for renewal, so no changes could be made at that time. It was disappointing, but I stayed hopeful.

A year later

In fall of 2024, I got an unexpected email from the WIC director. The state’s Department of Health was now asking for input about adding blenderized formulas! I quickly responded with more research and explained how these products can even save money for Medicaid (which many WIC families rely on). I offered to speak directly to officials if needed—and hit send, fingers crossed.

Then in January 2025, I got the news: some commercial blenderized formulas had officially been added to Florida’s WIC program. The WIC director said my letters and persistence played a big role in that decision.

You can make change too

Advocating for yourself, your loved ones, or your patients can feel like a constant uphill battle. It takes energy and courage, and sometimes it feels like no one is listening. But your voice does matter.

One letter, one conversation, one email—those small actions can lead to big changes for many people. If a system isn’t working, speak up. Be persistent. You might be the reason someone else gets the care they need.

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Christy Figueredo MS, RD, CSP Clinical Pediatric Dietitian Division of Pediatric Gastroenterology, Hepatology & Nutrition University of Miami, Miller School of Medicine

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YOU CAN MAKE A DIFFERENCE: HOW ONE LETTER HELPED IMPROVE ACCESS TO NUTRITION FOR KIDS IN FLORIDA

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Understanding Choline Deficiency and Seeking Solutions for People Dependent on Parenteral Support Jacqueline Zummo, PhD, MPH, MBA | Co-Founder and Chief Scientific Operations Officer at Protara Therapeutics

When it comes to nutrition, most people are familiar with nutrients like calcium, sodium, and vitamins. But many may not recognize Choline — Choline is an essential nutrient that plays a critical role in many bodily functions, including liver health, brain development, muscle movement, and metabolism. While most people obtain sufficient choline through foods such as eggs, dairy products, meat, fish, and vegetables, individuals dependent on parenteral support (PS) face significant challenges in maintaining adequate levels of this essential nutrient. A recent study found that 78% of people on PS are choline deficient.Why does Choline deficiency matter when it comes to individuals dependent on PS? Cholinedeficiency can lead to significant health complications, including liver dysfunction, muscle damage, and cognitive impairments.

In fact, Choline supplementation is recommended for patients receiving PS by the American Society for Parenteral and Enteral Nutrition (ASPEN) in its Recommendations for Changes in Commercially Available Parenteral Multivitamin and Multi–Trace Element Products Guidance, as well as by the European Society for Clinical Nutrition and Metabolism (ESPEN) in its Guideline on Home Parenteral Nutrition.Despite the critical need, Choline is not included in any parenteral support solutions today and often remains overlooked in clinical care. Recognizing this important need in the PS community led my co-founder, Jesse Shefferman, and me to start a new company, a clinical-stage biotechnology company in New York City. We started the company in 2017 with the goal of developing an intravenous formulation of Choline for individuals on PS and have been researching an investigational treatment called IV Choline Chloride since that time. We hope to receive FDA approval so that IV Choline Chloride may be included as part of PS when oral or enteral intake of Choline is not possible or insufficient.

In 2024, we shared results from an observational study called THRIVE-1 to evaluate the prevalence of choline deficiency and liver damage in adolescents and adults who are dependent on PS. Key results from this study showed that 78% of people dependent on PS were choline deficient, and of those, 63% had some sort of liver dysfunction. These results show that clinical trials of Choline formulations for patients on PS are vital to ensure that therapies being developed are safe and effective. For those at risk of choline deficiency, clinical trials offer hope, laying the groundwork for regulatory approval and broader access to new therapies that can potentially improve health and well-being.

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There are plans to initiate a clinical study called THRIVE-3 later this year, marking an important step forward in addressing Choline deficiency. THRIVE-3 will assess the safety and efficacy of IV Choline Chloride in adolescents and adults receiving PS. This trial offers hope for a future where PS patients have access to further essential nutrients that support their health. By advancing research and gathering critical data, this study can bring us closer to developing an approved IV choline therapy that could significantly improve outcomes for people on PS. Curious to learn more about Choline deficiency and our IV Choline Chloride program for people on PS? Join the session at the Oley Conference on Friday, June 20th from 9–9:45 AM for a special session with Dr. Alan Buchman, where he’ll explore what Choline is, why it’s important for patients on PS, and share the latest updates on our research and development plans. Be sure to stop by booth #207 to meet some of the clinical team, learn more about our program, and get your questions answered by experts!

Not attending the Oley conference? No problem! Register for our upcoming webinar co-hosted with the Oley team this coming July. Stay tuned for additional details. We’ll cover similar topics including more about our company, how clinical trials work, and what participation looks like in our upcoming THRIVE-3 study. Whether you connect with us in person or online, this is a great opportunity for people on PS to learn more about Choline deficiency and better understand what Choline could mean for their health.

To learn more about IV Choline Chloride, please visit: www.protaratx.com For additional questions, please contact: patients@protaratx.com

Protara Therapeutics is a clinical-stage biotechnology company committed to advancing transformative therapies for people on parenteral support (PS).

We are developing intravenous (IV) Choline Chloride, an investigational IV phospholipid substrate replacement therapy, for adult and adolescent patients dependent on parenteral support (PS). Choline is critical for healthy liver function and also plays an important role in brain development and neurotransmission, muscle function and bone health. There are currently no available PS formulations containing choline.

Scan to learn more about our clinical trial of IV Choline Chloride for patients on PS.

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The Oley Foundation is working with multiple companies conducting paid, in-person market research sessions on-site at the Oley Conference in Charleston, SC on Tuesday, June 17.

They’re looking to hear from individuals with lived experience and/or their caregivers/care partners.

Your feedback will help inform the development of future nutrition support products or improve current products.

Complete a short survey to be considered or share this opportunity with others in the Charleston area who may be eligible.

Complete 10-minute survey here. https://forms.office.com/r/3X85ivGSH2 Email info@oley.org with any questions.

Get all the help you need with your Infinity or CURLIN pumps from the comfort of your own home!

Find videos, guides, downloads, FAQs, troubleshooting tips, and much more at moogmedical.com. And we are always available 24 hours a day, 7 days a week at (800) 970-2337.

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Heading to the Oley Conference? Or live around the Charleston, SC area?

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2025 Calendar

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

June 17-20, 2025: Oley 2025 Annual Conference, Primed and Ready to Grow, Charleston, SC June 24, 2025: Community Connections Time July 29, 2025: Community Connections Time August 14-16, 2025: United Ostomy Associations of America’s 9th National Conference August 26, 2025: Community Connections Time September 8-12, 2025: Malnutrition Awareness Week September 20, 2025: Oley Regional Conference, Kissimmee, FL

Oley Events

Community Connections

The Last Tuesday of each month (typically) 7:00 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.

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

By your side and beyond Don’t forget to register!

Kangaroo OMNI™ Enteral Feeding Pump

Explore the future of enteral feeding To learn more, visit us at Booth 107 at the upcoming Oley Conference.

©2025 Cardinal Health. All Rights Reserved.

Lit. No. 2NDL25-3427008 (04/2025)

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

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Thank You Corporate Partners

-New Partner Ajinomoto Cambrooke offers two Amino acidbased formulas, EquaCare Jr and Essential Care Jr, for children with food allergies and digestive disorders. EquaCare Jr similar nutrition and taste as other brands, but a lower price. Essential Care Jr., made with natural ingredients, no corn syrup solids, no artificial flavors, and no artificial sweeteners. Essential Care Jr. is carefully designed with nutrients that may help to deliver resolution of gastrointestinal symptoms, while still meeting the needs of those with food allergies. For more information visit www.Cambrooke.com

Alcresta develops rare disease, enzyme-based products helping to address fat malabsorption in patients who are enterally fed at home or in the hospital. Our RELiZORB® (immobilized lipase) is indicated for use in pediatric patients (ages 1+) and adult patients to hydrolyze fats in enteral formula. Please see Instructions for Use at www.relizorb.com.

Real Food Blends provides 100 percent real food meals and nutritional variety to people with feeding tubes. With eight meals and one snack, and only five to eight ingredients in each, it is the only ready-to-feed, 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.

To learn more visit Realfoodblends.com

Option Care Health is the nation’s largest independent provider of home and alternate site infusion services. We specialize in infusion treatments for a broad range of acute and chronic conditions with access to the most innovative therapies and drugs available nationally. To learn more, please visit our website at OptionCareHealth.com.

Notable Individual Contributors 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. We are sincerely grateful for your support as it helps advance our mission. To see a full list of individual contributors please visit http://oley.org/horizon The Oley Foundation Team

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Please join Oley in thanking the companies that support us year-round. Learn about some of our corporate contributors in their own words below. For a complete list of corporate partners go to https://oley.org/page/PartnerShowcase