LifelineLetter, Spring 2025 by OleyFoundation

LifelineLetter

Connecting the nutrition support community, line by line The

08 Discharge Planning for Home Tube Feeding

Foundation is a home

Hear from healthcare experts at the American Society of Parenteral and Enteral Nutrition (ASPEN) on ways to streamline this process.

14 Behind the Design: The Making of the Oley Kidz Klub Logo

The Oley Kidz Klub logo is more than just a design—it’s a symbol of strength, community, and joy for young Oley members, 0-12 years old, who live with feeding tubes and parenteral nutrition (PN).

18 Oley Meet and Greet between Past and Present

Staff members Cathy Harrington and Andrea Taylor met with Oley Co-Founder, Dr. Lyn Howard, Joan Bishop, and Dr. Jill Genua at the Albany Medical Center in New York.

community and advocacy group. Learn more: 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, CNSC, CHES

Operations Manager: Cathy Harrington

Manager of National Advocacy: Andrea Taylor, RD, CNSC

Operations Coordinator: Melissa Hansen

Youth Program Coordinator: Jade Lusk

Digital Marketing Coordinator: Fiorella Perlloni

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; Shirley Huang, MD; Sivan Kinberg, MD, MS, MA; Vanessa Kumpf, PharmD, BCNSP, FASPEN

Science & Medicine Advisor: Manpreet Mundi, MD, FASPEN

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

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

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

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

How to Support

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

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

Spring 2025 • Volume 46, 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

Primed and Ready to Grow: Oley’s Vision for 2025

Beth Gore, PhD | CEO of the Oley Foundation

"I wish I had found Oley sooner! " This is one of the most common things we hear from people once they discover The Oley Foundation. In 2025, we are making it our mission to change that. Our theme for this year— Primed and Ready to Grow—is more than just our conference slogan; it’s our focus for 2025.

Expanding Our Reach: Finding and Supporting Patients Sooner

One of our top priorities is identifying and reaching more people on nutrition support earlier in their journey. Who is on tube feeding or parenteral nutrition (PN)? Where are they? How can we connect with them sooner? From the moment someone begins tube feeding or PN, there are clinicians, members of the industry, and other key players who could help connect them with Oley. We are developing targeted resources to streamline this process and make it easier for patients to find their community of support faster.

Expanding in Education: More Resources, More Access

Quality education that is both peer-reviewed and patient-friendly is essential. In 2025, we’re expanding our educational efforts by:

• Increasing the number of resources we offer, ensuring patients and caregivers have access to the most up-to-date and reliable information.

• Offering education in more formats to meet different learning needs.

• Translating resources into Spanish to reach more people in diverse communities.

• Updating current resources and filling in the gaps so that information is accessible in the right scope and sequence for comprehension.

• We’ve hired Education Manager, Kalee Eichelberger, MS, RD, LE/N, CNSC, CHES

Expanding in Community: More Support, More Connection

Support is at the heart of everything we do, and in 2025, we are growing our community efforts by:

• Increasing the frequency of our virtual and in-person meetups, starting with our first in-person Regional Conference March 22, 2025 in Columbus, OH. Register at oley.org/page/regionals.

• Expanding the types of support available, including topic-based peer groups, mentorship programs, and more.

• Relaunching the Oley Ambassador program as a peer to peer support system.

• Hiring Vincent Rosche as the Community Engagement Coordinator. His role will be to be a voice to, of and for those on nutrition support.

• Hiring Shakira Valentin as the Community Care Coordinator. She also helps translate our documents into Spanish, is available for our Spanish speakers who call into Oley, and provides ASL translation.

Expanding in Advocacy: Taking a Proactive Approach

The challenges faced by the nutrition support community—from supply shortages to insurance reimbursement battles—require a strong, proactive approach. In 2025, we are committed to:

• Strengthening our advocacy efforts for better insurance coverage and reimbursement policies.

• Partnering with other organizations and stakeholders to tackle supply chain vulnerabilities and ensure patients have consistent access to essential supplies.

• Engaging patients, caregivers, and healthcare professionals to amplify our collective voice.

Growing Our Team & Volunteer Network

To achieve all of this, we can’t do it alone. We need passionate volunteers to help make this vision a reality. We need both those with clinical expertise and lived experience in multiple areas. Please complete the volunteer form Clinical Volunteer Form Patient & Caregiver Volunteer Form, and let’s make sure that no one on nutrition support has to navigate this journey alone. Let’s grow Oley—bigger, stronger, and more connected than ever.

Oley Staff Updates

We are pleased to welcome several new staff members to the Oley Foundation team. Kalee Eichelberger, MS, RD, LD/N, CNSC, CHES joins as Education Manager, bringing expertise in nutrition education. Melissa Hansen steps in as Operations Coordinator, ensuring efficiency in our daily functions. Fiorella Perlloni will serve as Digital Marketing Coordinator, enhancing our marketing efforts. Vincent Rosche joins as Community Engagement Coordinator, fostering connections within the Oley community. Shakira Valentin takes on the role of Community Care Coordinator, supporting patients and families. We are excited to strengthen our mission with such dedicated and talented professionals.

Kalee Eichelberger, MS, RD, LD/N, CNSC, CHES Education Manager

Kalee Eichelberger is a clinical dietitian and certified health educator with diverse experience in healthcare, public health education, patient advocacy, and medical nutrition therapy. Her journey began as an individual reliant upon nutrition support herself, which inspired her career in clinical nutrition. Her career focus has been on the process improvement and management of nutrition support therapies in the hospital, ambulatory and home settings and during transitions of care. Currently, Kalee serves as the Education Manager for the Oley Foundation where she develops, coordinates and oversees the educational programs and initiatives of the foundation. She strives to make a meaningful impact on the quality of life, care ownership, and patient care experience of individuals on home nutrition support.

Melissa Hansen Operations Coordinator

Melissa Hansen is our Operations Coordinator. With a proven track record in streamlining processes and enhancing operational efficiency, project management, and a keen eye for detail, she has successfully overseen various initiatives that have resulted in significant cost savings and improved productivity. Her expertise lies in coordinating cross-functional teams, managing project timelines, and ensuring that project deliverables meet quality standards. She is passionate about driving operational excellence and believes that a well-organized operation is the backbone of any successful organization.

Fiorella Perlloni Digital Marketing Coordinator

Fiorella is a native of San Juan, Puerto Rico, and holds a Bachelor’s in Advertising from Universidad del Sagrado Corazón. Before joining The Oley Foundation, she served as the Marketing and Advertising Manager for the West Orange Chamber of Commerce. Prior to that, as Digital Marketing Communications Manager for Orlando District 2 Commissioner Tony Ortiz. Fiorella’s expertise in advertising and brand management helps strengthen Oley’s mission and presence.

DIGESTIVE

Vincent Rosche Community Engagement Coordinator

Vincent Rosche was diagnosed with CIPO at age 4 and has been a patient ever since. He received his first feeding tube and central line at 6 and now, at 33, relies on both, receiving PN nightly. A former volunteer at the Oley Foundation, he is passionate about helping others with similar conditions. Despite his illness, he competes as a bodybuilder, winning multiple competitions and earning international invitations. Fitness has greatly improved his health, making the gym a key part of his life. He lives with his girlfriend, Gabriella, and their dog, Adida, and is excited to use his experiences to make a difference.

Shakira Valentin Community Care Coordinator

Shakira is an optimistic and creative educator with Puerto Rican roots who moved to Florida to apply her knowledge and expertise in elementary and special education. With over 20 years of experience, she is passionate about supporting and encouraging others to embrace an optimistic perspective on the world around them. Beyond her career, Shakira treasures time with her beautiful family, including her loving husband, two wonderful sons, and their sweet cat. She enjoys reading, spending time with family and friends, and inspiring others to see challenges as opportunities for growth. She believes that life is a journey of continuous learning and that with a positive mindset, there are no limitations-only steps in a process that lead to new possibilities and a fulfilling life. Her motto is “A joyful heart is good medicine.”

DISEASE NATIONAL COALITION (DDNC) 2025 RECAP

Vincent Rosche | Oley Community Engagement Coordinator

the House and Senate regarding acts and bills related to nutrition is commendable and vitally important.

There are several acts that significantly impact the Enteral and Parenteral Nutrition (EN and PN) communities, particularly the

Safe Step Act. As a consumer, I have personally experienced the challenges of step therapy which forced me to trial less effective and cheaper medications after years of successfully managing my condition with a medication that worked well for me.

Additionally, the Medical Nutrition Act is a crucial piece of legislation for the EN and PN communities, as it would ensure coverage for medically necessary foods and vitamins required for managing digestive and metabolic disorders. If we lose support for these bills, it could have a detrimental effect on our community, potentially diminishing the quality of life for many individuals.

With the new administration placing a strong emphasis on health and wellness, I am hopeful that these bills will pass, allowing us to make a meaningful difference in the lives of those affected by these conditions.

Once again, thanks to DDNC for hosting this event. I look forward to participating again as part of the coalition of organizations supporting patients with digestive diseases.

DDNC Attendees from Florida and Georgia, including Oley Community Engagement Coordinator Vincent Rosche on the far left

would like to express my sincere gratitude for the opportunity to not only attend on behalf of the Oley Foundation but also serve as one of the patient speakers at DDNC 2025. The work this organization is doing to raise awareness within

oley 2025: primed and ready to grow

Oley Conference 2025: Primed and Ready to Grow

Fiorella

Perlloni | Digital Marketing Coordinator

The Oley Foundation is thrilled to announce the Oley Conference 2025, taking place from June 17- 20, 2025, in Charleston, South Carolina. This premier annual event brings together patients, caregivers, and healthcare professionals dedicated to home nutrition support and tube feeding, offering education, connection, and empowerment.

A Must-Attend Event for the Home Nutrition Support Community

Why attend as a Patient or Caregiver?

• Connect: Be in a unique environment with others who get it. Share stories, strategies and support.

• Learn: Gain knowledge from expert speakers, thought- provoking sessions and the latest exhibitor innovations.

• Have Fun: Attend our social events and activities and enjoy connecting with others while having fun.

Why attend as a Clincian?

• Professional Development, Education and CE: Stay updated on advancements in the field, refine your expertise, and enhance your ability to provide optimal patient care while earning CE.

• Network: Exchange ideas, collaborate and strengthen professional relationships with those from multidisciplinary backgrounds.

• Patient Perspectives: Gain valuable insight into the challenges, successes, and perspectives directly from those on nutrition support.

Keynote Speakers: Tripp Hays & Trinity Lowthian

Midnight and Magnolias & A Double Edged Sword

Tripp and Trinity bring two powerful perspectives on the dualities of life. From Charleston’s rich, colorful history to the inspiring journey of a Paralympic fencer

on nutrition support, this session promises to be thought-provoking and empowering.

Why Charleston, SC?

Known for its southern hospitality, rich history, and stunning coastal views, Charleston provides the perfect setting for attendees to learn, network, and relax in a welcoming environment.

Event Highlights

• June 17 | Welcome Reception: "Voyage on the High Seas" – Kick off the conference with games, contests, and fun!

• June 18 | Wear Your Pump Fashion Show – HEN & HPN patients take the runway to showcase their confidence and adaptive fashion. Register at oley2025.vfairs.com/en/fashion-show.

• June 19 | Karaoke Night & Jammin’ Jammies – A night of music, fun, and a supervised PJ party for kids!

• June 20 | 2026 Kickoff Lunch – Celebrate the week and be the first to hear the 2026 conference location reveal!

Register Now!

The Oley Conference 2025 is a FREE event for patients and their families. Don’t miss this chance to learn, connect, and grow within a supportive community dedicated to improving lives. To register please visit oley2025.vfairs.com/en/.

Submit Your Nominations NOW: 2025 Oley Awards

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

The Awards & Criteria

HPN Hero Award

Rising Star Award

Joan Bishop Lifetime Achievement Award

Winner to be chosen by the Oley Board of Directors

Nominee must:

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

• Be an Oley Foundation member;

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

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

HEN Hero Award

Caregiver Extraordinaire Award

Important HPEN Award Reminders

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

Discharge Planning for Home Tube Feeding: What to know before you go

Written by Catherine Karlak, MS, RD, CD, CNSC and Samantha Honeywell, MS, RD, LDN, CNSC with the ASPEN Enteral Nutrition Education Subcommittee

discharge from the hospital. Understanding what services and equipment your home infusion company will (and will not) provide can prevent unexpected surprises in the future. Don’t hesitate to reach out to the hospital staff to get answers to your questions. Before you leave the hospital, make sure you know the following:

• The name and contact information for your equipment supplier

• What medical professional should you contact if you have questions or concerns about your tube feeding prescription, and/or the feeding tube itself

• What supplies will be provided for use at home, and if they are different from what is used in the hospital

• When your first delivery of supplies will arrive, and if the hospital can provide any supplies to take home, in case of a delayed delivery

• What your insurance covers, and what will your costs be

• What kind of feeding tube you have

• Your tube feeding prescription, including the name of the formula, and the volume of formula you should receive each day and whether you will need to change formulas in the future

• How you will administer your formula by pump, bag or syringe, being sure to flush with water before and after all feedings and medications

• Call your supplier to obtain refills of formula and supplies, typically when you have 5-7 days of formula and supplies remaining

• Unopened formula can be stored at room temperature. Open cartons should be covered and stored in the refrigerator for up to 24 hours. Formula can be removed from the refrigerator 30 minutes before using if cold formula causes discomfort, but it should not be warmed

• Formula can be in an open feeding bag for up to 12 hours before it needs to be discarded. Do not top off formula in a bag as this could lead to bacterial contamination

• There will be limits on the amount of supplies your supplier will provide. Ask how many times your equipment can be re-used before it needs to be replaced

• If being reused for more than 24 hours, pump and gravity bags should be rinsed out and stored in the refrigerator between uses. Wash other supplies with hot soapy water and let air dry before storing in a clean container

• In most cases, the timing of feeds can be adjusted to fit your schedule. Work with your healthcare team to make adjustments while ensuring you receive your daily formula and water volumes

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SYMPTOM MANAGEMENT

Here are some tips and tricks to deal with common issues:

• Weigh yourself regularly, and report any rapid changes to your healthcare team. This might indicate you are getting too much fluid, or not enough. Gradual weight gain or loss may mean you need to adjust the amount of tube feeding you are receiving

• You may need to increase your fluid intake during warm weather. Fever, vomiting and diarrhea can lead to dehydration. Signs of dehydration include increased thirst, dry mouth or skin, decreased and/ or dark urine, rapid weight loss, headache, lightheadedness, weakness, or flushed skin

• If you have nausea and/or vomiting, you may need to slow down or stop your feeding. Try administering over 10-20 minutes or longer. If you are using a pump, try a slower rate, increasing every two to four hours as nausea improves. If nausea persists, reach out to your healthcare team for help

• If you are experiencing abdominal pain and/or diarrhea, you can also temporarily reduce the amount of tube feeding you are receiving. Medications and medical conditions can contribute to diarrhea, so consult your healthcare team if you have loose stools for more than 24 hours. Call the healthcare team immediately if abdominal pain is severe, or if you have black or bloody stools

• Medications and medical conditions can contribute to constipation or diarrhea. Adjusting medication formulation, fluid intake, using a fiber-enhanced formula or fiber supplement may help. Consult your healthcare team to determine what is most appropriate for you. Your healthcare team may recommend stool softeners, laxatives, suppositories, enemas or anti-diarrhea medications

• Sit upright or keep the head of your bed elevated (30-45 degrees) during feedings. Do not lay flat for at least 30-60 minutes after feedings are complete.

TUBE AND EQUIPMENT TROUBLESHOOTING

You are bound to run into unanswered questions or concerns along the way. Don’t forget, you can always reach out to your healthcare team with questions and assistance. For now, here are some things to know about troubleshooting issues you may run into with your tube or equipment:

• Clogged feeding tubes are commonly due to issues with medication administration, or not flushing the tube properly. Concentrated and homemade formulas can also lead to blockages. Do not mix medicine

with formula. Give medicines one at a time. Tablets, liquid medications, and (opened) capsules should all be mixed with an ounce of water for administration. Be sure to flush the tube well with warm water before and after putting anything through your feeding tube. Flush the feeding tube at least once daily even if you are not using it for feeds and every 4-6 hours with continuous feeds. Don’t use carbonated beverages to try and unclog the feeding tube -- reach out to your healthcare team about next steps if flushing with warm water doesn’t work.

• Your feeding tube site should not be red, irritated, painful, or leaky once the tract has healed. Check the tube site daily to ensure it stays clean and free of any smells or odors. Report any issues immediately to your healthcare team.

• Use a permanent marker to mark your tube about 1 inch from where the tube enters your abdomen. Check this distance daily. If the tube moves more than 1 inch, contact your healthcare team.

• Formula administration should not be painful. Contact your healthcare team if your stoma site or tube begins to leak, clog, becomes dislodged, or becomes painful or uncomfortable.

• If your feeding tube was placed with sutures, your medical team should let you know how to care for the sutures, if you should expect them to fall out on their own, or if they need to be removed. Dissolvable sutures usually fall out within two weeks of tube placement.

• There are different types of feeding tube connectors such as ENfit™ and legacy connectors. Make note of which type of connector you have so that you can order the appropriate supplies/adaptors and let your healthcare team know if you are admitted to a hospital.

• Develop an emergency plan with your healthcare team including:

- A backup plan to administer your formula should your feeding pump malfunction or become unusable. Some people may be able to use syringes, gravity feeding bags or other feeding devices instead, while others may only be able to use a pump.

- Keeping extra formula, syringes, and other materials on hand that you may need to properly clean and care for your tube in case there is an emergency that restricts your supply delivery. If you find yourself without the proper materials to care for your tube, contact your healthcare team.

MARCH 22–25, 2025 COLUMBUS, OHIO

SO MANY OPPORTUNITIES

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

▸ Join live presentations and discussions

▸ Ask questions, connect with experts and peers

▸ See product innovations

SO IMPORTANT

To you and others on home nutrition support therapy

SPECIAL DISCOUNTS

Available for consumers and caregivers

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

• You may find yourself wishing you had more options for better clothing, tools, accessibility, or accomodations.

MOVING FORWARD

Once you feel confident managing your tube feeds independently, there are additional considerations you may think about moving forward.

• When it is time to get your tube replaced, you may have the choice between a standard tube and a low profile tube. You may also have the choice between an ENfit™ or legacy tube. Ask your healthcare team about what is available to you and the best option for your situation.

• Much like changing your dietary patterns when eating by mouth, there may come a time when you want to explore other tube feed formula options. You may even begin considering transition to a home blenderized diet.

•It is important and necessary to discuss this with your healthcare team to ensure the formula meets your medical and nutritional needs and that it is compatible with your tube and feeding supplies.

• If you have been told that you are also able to eat by mouth, it will be important for you to work closely with your healthcare team to determine if there are any changes to be made to your tube feeding plan.

• It is unlikely that your initial tube feeding prescription and plan will be the same for the rest of your life. Work with your team to set goals for weight management, treatment plans, and timelines. Don’t be afraid to ask your team about long-term plans. They will be able to act as resources and help guide you to whatever you would like to accomplish.

CONCLUSION

Throughout your tube feeding journey you will move through many transition periods, have questions, and accomplish many of your goals. Remember, your questions, concerns, and ideas are all important and should be brought to the attention of your healthcare team. Make sure you always know their contact information and who to contact for specific problems. Never hesitate to lean on your resources for help.

ADDITIONAL RESOURCES

Friends and Family Guide to Tube Feeding

Questions to Ask Your Provider About Tube Feeding What is Enteral Nutrition

Celebrating 50 Years of ASPEN and our trailblazing community!

nutritioncare.org/conference

9:15 AM

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

SATURDAY, MARCH 22, 2025

9:00AM - 5:30PM IN PERSON

SATURDAY, MARCH 22, 2025

11:00AM-12:30PM VIRTUALLY

Oley Acquires Feeding Tube Awareness Foundation and Feeding Tube Awareness Week® (FTAW) Assets

The Oley Foundation is proud to announce the acquisition of the Feeding Tube Awareness Foundation and the FEEDING TUBE AWARENESS WEEK® trademark and other assets, strengthening its commitment to the tube feeding community. This strategic move integrates Feeding Tube Awareness’ impactful advocacy and education efforts with Oley’s extensive resources, broadening outreach and support. Oley invites clinicians, caregivers, and advocates to support this transition and help shape future initiatives. Details coming soon for the February 8-14, 2026 FTAW at oley.org/tube.

FTAW Recap: February 2 to February 8, 2025

Oley and our members celebrated FTAW from February 2 to 8, 2025 and we are proud of the educational opportunities provided. Special thanks to our FTAW Sponsor Real Food Blends ®

FTAW: Niagara Falls Illumination

We kicked off FTAW in a spectacular way as Niagara Falls illuminated in vibrant purple and blue, symbolizing strength and support for the feeding tube community. Whether witnessed in person or virtually, this stunning display helped raise awareness and spark important conversations. A heartfelt thank you to the Niagara Falls Illumination Board for making this incredible tribute possible and helping us shine a light on feeding tube awareness!

Virtual Kidz Klub Sponsored by Avanos Medical, Inc.

We invited kids ages 4–12, or teens in this developmental age range, who are on nutrition support or have close family connections to someone on nutrition support to join us for a special Valentine’s Day-themed story event! With the help of a parent or guardian, participants dove into an interactive adventure where they helped decide what happened

next. It was a fun and engaging way to make new friends and share a memorable experience together. Special thanks to our sponsor, Avanos Medical, Inc., for making this event possible!

Explore Product Coverage and Access Assistance Support with Nutricia Navigator Sponsored by Real Food Blends ®

We explored Product Coverage and Access Assistance Support with Nutricia Navigator in an informative session presented by Stacey McSwine, Coverage and Payor Account Manager. Participants discovered the key features and benefits of Nutricia Navigator’s assistance program and learned valuable tips on how to make the most of this valuable resource. A special thanks to our sponsor, Real Food Blends®, for making this session possible!

Anticipatory Grief Discussion for Caregivers

We hosted a powerful discussion on anticipatory grief, ambiguous losses, and secondary losses, topics that are often not discussed but deeply affect parents of medically complex children. Led by Jennifer Siedman, mother to a medically complex son and Director of Community Engagement at Courageous Parents Network, the session provided valuable insights into these often-overlooked aspects of grief. Jennifer shared strategies and tools for reframing grief and finding balance, coping, and strength. It was a meaningful conversation that helped families understand that grief is a natural, common part of their journey, and they are not alone.

Consumer Conversations Video Sponsored by Nestlé Health Science

We recently shared an inspiring video featuring longterm enteral nutrition (EN) consumers as they opened up about their personal journeys navigating the challenges of home enteral nutrition (HEN). The video offered valuable insights into self-advocacy, building support systems, and finding ways to lead fulfilling lives despite complex medical needs. Through their stories, we explored how resilience and community support can truly transform the HEN experience. A special thank you to our sponsor, Nestlé Health Science, for making this video possible. It was an eye-opening and motivating session filled with powerful perspectives that shouldn’t be missed!

The full FTAW webinar series is now available at www.youtube.com/@TheOleyFoundation

March Webinars

Gastroparesis & Nutritional Support: What Now?

Diana McFarlane, MPAS, PA-C, provided an indepth look at managing gastroparesis, focusing on treatment options beyond diet and medication. She also discussed when nutritional support may become necessary for patients. Sponsored by Enterra Medical, Inc., this session offered valuable insights for patients, caregivers, and healthcare professionals seeking to better understand and manage gastroparesis.

If you missed the live event, you can still benefit from this informative discussion. The full webinar is now available on Oley's YouTube channel.

We want to hear from you! How did you help spread awareness during Feeding Tube Awareness Week? Tag us on social media or share your stories with us at info@oley.org.

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

behind the design

Active Youth Community

The human-like figures forming the "K's" in Kidz Klub symbolize children actively living their life while on feeding tubes and parenteral nutrition (PN) or being supportive of others who are.

Medical Elements

Recognizing the importance of normalizing medical devices, a PN bag, feeding bag, and a backpack were added to the design. By including these elements in a fun and friendly way, the logo celebrates the unique journey of Oley Kidz Klub members.

Bringing the Logo to Life

Behind the Design: The Making of the Oley Kidz

Klub Logo

Jade Lusk | Youth Program Coordinator

The Oley Kidz Klub logo is more than just a design— it’s a symbol of strength, community, and joy for young Oley members, 0-12 years old, who live with feeding tubes and parenteral nutrition (PN). This logo was created with the input of Oley teens, who came together to brainstorm ideas and ensure that it truly reflected the experiences and spirit of the group. One in-person idea session, held at our conference in Tempe, Arizona, as well as an online session provided us with great ideas. Through group discussions, sketches, and idea-sharing, the kids and teens identified key ideas they wanted to see in the final design. Many elements were included in the final design.

"A celebration of strength, community, and individuality"

Colorful and Unique

The words Kidz Klub were designed with bold, colorful letters to capture the energy and diversity of the group. Each letter has a unique color, representing the individuality of each child in the Oley community. Using the black background and outline to highlight each letter we hoped to help our logo be easily read by those who are color blind.

After finalizing the design, playing around with the colors, and asking for feedback, our Kidz Klub logo was born. Special thanks to Olivia, Eoin, Kellen, and the teens who played a crucial role, as well as Jessika Buehne who used her digital art skills to bring the ideas to life. The result is a vibrant and meaningful logo that symbolizes each child's strength, their part in this community, and the joy we feel when we celebrate who we are, together.

The Oley Kidz Klub logo stands as a testament to the creativity and passion of the Oley community, designed by and for the kids and teens who make it so special. It’s more than just an image—it’s a badge of belonging, celebrating every child’s journey with confidence and pride.

Kidz Klub Brings Fun and Care to the 2025 Oley Conference

Adult attendees of this year’s Oley Conference can focus on learning and networking, knowing their little ones are in safe hands at Kidz Klub—a dedicated childcare kidz camp designed to provide an

Continued on next page >

Above are some of the logo design ideas submitted by Oley's youngest members during Virtual Kidz Klub.

engaging, enriching, and fun experience for children ages 4-12. With morning and afternoon sessions, Kidz Klub provides a safe, structured, and enjoyable environment, ensuring parents have peace of mind while attending conference sessions. Kidz Klub does not care for our participants' medical needs but does stay in close contact with parents for all needs that may appear. Connecting with peers in similar situations, children will leave with great memories, new friendships, and a smile on their faces.

Special Activities and Teen Participation

While Kidz Klub is designed for younger children, select activities will also be open to teen participants as space allows, welcoming older siblings to join in on the fun. One of the standout events is a special art workshop led by a local artist, giving children and teens the chance to express their creativity through specialized art projects. Another exciting feature of this year’s program is a session hosted by the South Carolina Aquarium. In this interactive experience, "From the Mountains to the Sea", the aquarium will introduce children and teens to the ecosystem of Charleston.

Alongside this engaging presentation they will also be bringing with them information about their Sea Turtle Care Center. Some of their turtle patients have similar health conditions as some of our Oley Youth. We are excited to have them teach the youth all about their work and the many aquatic animals they have to feed in different ways within their large aquarium tank. Including an eel who is fed with a large "tube" pipe.

One of the biggest highlights of Kidz Klub is our movie night called Jammin Jammies, where children can unwind after a full day of activities. With a family-friendly

film selection, our pajama attire, and glow in the dark fun, Jammin Jammies offers a fun way for kids to end their day while their parents enjoy their evening conference events.

For more information on registration and availability, be sure to check the Oley Conference website. If you are interested in volunteering for Kidz Klub contact us at info@oley.org. Don’t miss the opportunity to make the most of your conference experience while your child enjoys an adventure of their own at Kidz Klub!

from firefighting to fighting for my life

From Firefighting to Fighting for My Life: Navigating Grief and Chronic Illness

Jessika Buehne | Oley Member

I was a healthy, active kid, rarely sick and passionate about sports. After high school, I found my dream career in fire and emergency medical services. I loved the challenge of problem-solving as part of a team while helping my community. At my peak, I felt unstoppable—until the bowel obstructions began.

It started in 2019 at my brother’s high school graduation. I woke up with severe abdominal pain but dismissed it as ovarian cyst pain, something I was used to dealing with due to PCOS. I pushed through the day but struggled to eat and keep food down. By evening, I was in so much pain my mom took me to the ER. A CT scan revealed a bowel obstruction, surprising everyone since I had no history of abdominal surgeries. With an NG tube, the blockage resolved without surgery, and I was discharged. I didn’t realize this was only the beginning of a long, painful journey.

Over the next year, the obstructions became frequent, leading to multiple hospitalizations. Despite countless tests, no GI specialist could identify the cause. I was losing weight rapidly, my hair was falling out, and my energy plummeted. The removal of my gallbladder brought no relief. By August 2020, I experienced my worst obstruction yet, losing 55 pounds in three weeks. I had to leave the fire department for a job at an urgent care clinic, but my condition worsened. One of the doctors noticed my decline and referred me to an out-of-state center for specialized care.

At the new center, I was diagnosed with intestinal failure caused by chronic intestinal pseudoobstruction (CIPO), likely a genetic condition. By late 2020, I was on 24/7 parenteral nutrition (PN), as my body could no longer absorb nutrients properly. Weighing just over 90 pounds and struggling with

severe symptoms, I was told I needed a multi-organ transplant, a devastating blow at just 21 years old.

In March 2021, I relocated to be closer to the specialized center. Terrified by the risks of a transplant, I opted for gut rehabilitation surgery first. While it improved my condition temporarily, I remained dependent on PN and knew a transplant was inevitable. The realization of my new reality hit hard. My dreams of helping others in emergency services were gone, replaced by the fight for my life.

Grieving the loss of my former life was overwhelming. I had been so full of hope and ambition, only to have my health steal everything I worked for. Despite the challenges, I’ve come to terms with my new path, finding strength in small victories and the support of loved ones.

Little did I know that I had already begun my grieving process months prior when I had to leave my job at the fire department, but most importantly being now on PN had taken a major blow to me mentally. Taking time throughout the past few years to outline and acknowledge the grief I have been enduring not only helped me begin healing mentally but also helped me learn how to live and prosper with my new way of life and opened many new doors of opportunity for me.

Grief is usually defined as something that is a loss/ change that alters your life and is personal. The five stages of grief, introduced by Elisabeth KüblerRoss, describe common emotional responses to loss: Denial, where individuals struggle to accept the reality of the loss; Anger, marked by frustration and blame; Bargaining, involving "what if" scenarios and attempts to regain control; Depression, characterized by deep sadness and withdrawal as the loss is processed; and Acceptance, where one comes to terms with the loss and begins to move forward. These stages are not linear or universal but provide a framework to understand and navigate the complex emotions of grief.

A few years back I sat down with my therapist and worked through each of these processes and outlined some points in where my journey lined up with these feelings. Here’s some points from my experience:

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Denial

Eating around people, ignoring my GI problems even though it causes me immense pain and discomfort

Engaging in activities that physically push my body beyond its current limit thinking I can still do “XYZ” with no consequences.

Anger

My illnesses taking away the career I worked so hard for, being the patient and not the caregiver anymore. Having to put my life on hold I worked so hard to build up just to move 13 hours away for a higher level of care.

Bargaining

If only I had advocated better for myself back in my home state, I wouldn’t have gotten so sick. Saying I’ll do anything to not be in pain no matter the cost.

Dealing with Depression

Feeling powerless to change the inevitable. Having to rely on medical devices and infusions for my survival.

Acceptance

Realizing that my TPN is essential and that it does help me feel better and give me the energy I need, and coming to terms with my new body and way of life by not letting it define me as a person.

My experience is just ONE experience out of many. Finding the time to sit down and really begin working through all that is happening to me really allowed me to better understand and appreciate the life I have now. Once I started doing that so many doors began to open that I didn’t even know were possible for someone like me. I also began to open myself up and allowed new connections to blossom within this

community. Having myself surrounded by others who also have experienced similar grief brought me a new sense of belonging and purpose. Plus, it allowed me to add new additions to my toolbox for navigating this crazy life on nutrition support.

Grief can be an overwhelming and frightening experience, often accompanied by a whirlwind of emotions like sadness, anger, and confusion. Acknowledging grief can feel daunting, as it requires facing the pain of loss head-on, which many instinctively avoid. However, confronting grief is a crucial step toward healing and growth. By allowing yourself to feel and process these emotions, you can begin to understand your loss and its impact on your life. Embracing grief opens the door to self-awareness, emotional resilience, and personal growth, enabling you to find meaning and rebuild your life in a way that honors your experience.

Elastomeric Enteral Feeding System

On the bottom/middle, former firefighter and Oley member,Jessika Buehne.

Oley Meet and Greet between Past and Present

Cathy Harrington | Operations Manager

On February 14th, staff members Cathy Harrington and Andrea Taylor met with Oley Co-Founder, Dr. Lyn Howard, Executive Director Emeritus, Joan Bishop, and Dr. Jill Genua, Division of Metabolic and Perioperative Support within the Department of Surgery at Albany Medical Center in New York. This powerhouse of women discussed the past and future of the nutrition support world.

Dr. Lyn Howard, a leading pioneer in the world for home parenteral and enteral nutrition, ran the Clinical Nutrition program at Albany Medical Center from 1973 until retiring in 2008. Early on, she realized patients needed information and support beyond

Research Announcement

A research study is underway to better understand the challenges feeding tube users face in accessing essential medication administration products, such as syringes and bottle adaptors.

This anonymous survey aims to quantify these challenges and share findings with key stakeholders, including retail pharmacies, hospitals, device manufacturers, distributors, ISMP, CMS, the FDA, and others. The goal is to drive action toward improving product accessibility and enhancing quality of care.

that which their physicians could provide. Together with Clarence “Oley” Oldenburg, Dr. Howard established the Oley Foundation in 1983. Over the years, Oley has connected many patients with the support they needed. In the beginning Oley members would gather for a local picnic in upstate New York. At that time, they had about 300 members in a few states. Over the next 43 years Oley grew and is now at an international level with 30,000 friends.

After Dr. Howard retired from practice, Dr. Ann Michalek took over seeing the adult home parenteral nutrition (HPN) patients. With the decrease in new physicians practicing in specialized nutrition support it was difficult for Dr. Michalek to retire when the time was near. Searching far and wide with little hope it looked like patients may not have anyone local to manage their care. Some would have to travel to Cleveland or Florida to find someone willing to take them on. It was a scary situation.

Then along came Jill Genua. Dr. Genua completed a fellowship in colon and rectal surgery at Cleveland Clinic Florida in Weston, Fla. She completed a residency in general surgery at Stamford Hospital/ Columbia University College of

Survey on Medication Administration & Product Accessibility for Feeding Tube Users

Participation is voluntary, and respondents may opt out at any time. No identifying information is collected.

Estimated time to complete: 5–10 minutes

To take the survey, please visit www.surveymonkey.com/r/NVZJ92T For questions, contact info@oley.org

From left to right: Dr. Lyn Howard, Andrea Taylor, Cathy Harrington, and Joan Bishop, previous Oley Executive Director

Physicians and Surgeons. She earned her medical degree from Albany Medical College.

She began her career in Long Island, NY and then moved back to the Albany area. In July 2024 she joined the new Division of Metabolic and Perioperative Support within the Department of Surgery at Albany Medical Center, where she will lead the expansion of metabolic nutrition care. Dr. Genua sees and manages complex pre- and post- surgical and medical patients who require an additional focus on metabolic nutrition, including adults on both enteral and parenteral nutrition and has taken over seeing Dr. Michalek’s patients.

Oley is very happy to be working alongside Dr. Genua and looks forward to collaborating on many projects to advance the care of patients on nutritional support. The biggest thing that patients are asking for is to connect with others on therapy.

Thank you, Lyn Howard, MB, FRCP, Joan Bishop, Ann Michalek, MD and Jill Genua, MD for your dedication and resilience and making a huge impact in many patients lives. The next 40 years look much brighter because of your tremendous contributions.

About Albany Medical Center

Albany Medical Center is the centerpiece of medicine, research, and medical education and one of the area's largest private employers. We are like no other health care provider in our region, providing our community with the highest level of patient care across disciplines, while receiving regional, national and international recognition for high standards in patient care, education and biomedical research. Visit https://www.albanymed.org/albany/ for more information.

Need help?

If you’re looking for help with your Infinity pump, we’ve got you covered.

Find videos, downloads, FAQs, troubleshooting, and much more at moogmedical.com.

And we are always available 24 hours a day, 7 days a week at (800) 970-2337.

From left to right: Joan Bishop, Dr. Jill Genua from Albany Medical Center, and Dr. Lyn Howard

2025 Calendar

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

March 21, 2025: Oley Award nominations due

Fill out the nomination form at oley.org/page/ nominations

March 22, 2025: Oley Regional Conference

March 22, 2025: ASPEN Oley Symposium at Greater Columbus Convention Center A213-215

*Attendees of the Oley Regional Conference will view the ASPEN Oley Symposium via live-stream during the conference.

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

June 17–20, 2025: Oley 2025 Annual Conference, Primed and Ready to Grow, Charleston, SC

For more information, visit oley.org,

Don’t Forget to Register!

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

Oley Events

Community Connections

4th 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.

Webinars

Fueling Resilience: Preparing for the Unexpected Throughout Your Nutrition Support Journey

APRIL 10, 2025 • 1 PM-2:00 PM ET

SPEAK ONE-ON-ONE ABOUT SBS

TO A PATIENT OR CAREGIVER WHO UNDERSTANDS

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

WITH SBS about the SBS journey

PEGGY, LIVING WITH SBS

MOM, JODI

REMEMBERING RICK DAVIS: A DEDICATED ADVOCATE AND FRIEND

It is with deep sadness that we share the passing of Rick Davis, a beloved and longtime member of the Oley community. Rick’s connection to the Oley Foundation began in 2001, and over the years, he became a guiding light for many. Before his health challenges, Rick served as the CEO of the Salt Lake City Convention and Visitors Bureau for 16 years. Following a stroke that left him unable to swallow and dependent on tube feeding, he turned his personal journey into a source of inspiration and advocacy. As Oley President from 2006 to 2011, Rick was a dedicated leader, always ready to support and mentor those new to therapy. His generosity and passion for raising awareness were evident in all he did—including his incredible achievement of hiking the Grand Canyon rim to rim. Rick’s kindness, resilience, and unwavering dedication to the Oley community will not be forgotten. Our hearts go out to his family during this difficult time.

FIGHTING FOR HOME PN ACCESS: ADVOCATING FOR CHANGE IN COLORADO AND BEYOND

On February 26, 2025 , members of our community took the fight for home parenteral nutrition (PN) access to the Colorado State Senate.

Connie Sullivan, President of the National Home Infusion Association (NHIA), alongside clinicians from Amerita and Option Care Health, testified before lawmakers about the rising costs of providing home PN. Their message was clear: shortages, regulations, and inadequate reimbursement rates are driving providers out of the market, creating monopolies or oligopolies in multiple states and putting patients at potential risk.

Dr. Lindsey Gumer, a physician at Denver Children’s Hospital and member of Oley’s Clinical Advisory Committee, led the charge by introducing SB25084. This bill brings critical awareness to the

challenges faced by patients who rely on home PN for survival. Several Colorado patients shared their personal stories in support of the bill, including one young child who sat beside her mother as she testified—putting a face to the real-life consequences of these systemic issues.

What triggered this was that until recently there were three home infusion providers that took Colorado state Medicaid. Now there is only one.

Oley’s CEO, Beth Gore, was invited to provide a national perspective, reinforcing that Colorado’s crisis is not unique. She thanked legislators and supporters for their leadership, noting that this bill could become a model for other states facing similar challenges.

While the focus of this hearing was Colorado state Medicaid, we see this as just the beginning. Beth has already started having meetings with state legislatures in Florida, the third biggest state by population and her home state. Once we have a blueprint that works in one or more states, we will write an action plan so you can help in your state.

Oley remains committed to working alongside Dr. Gumer, NHIA, and ASPEN to push for sustainable reimbursement policies that protect access to lifesustaining care.

Left to right: The Gutknecht Family of Colorado, Colorado State Senator Cleave Simpson, Dr. Lindsey Gumer (Denver Children’s Hospital), Connie Sullivan (NHIA), Allie Hoepker (Amerita), and Shane O’Connor (Option Care Health)

Thank You Corporate Partners

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

Amerita is a leading specialty infusion company focused on providing complex therapies and clinical services, including home nutrition support, to patients outside of a hospital at a convenient location in a patient’s home, infusion suite, or ambulatory infusion center. For more information about Amerita, please visit AmeritaIV.com

New Partner!

New Partner! New Partner! New Partner!

NorthSea Therapeutics B.V. is a private late-stage clinical biotechnology company developing novel and innovative strategies to treat orphan metabolic, cholestatic, and fibrotic diseases. Using structurally engineered fatty acids (SEFAs), NorthSea is advancing new therapeutic approaches to address serious unmet medical needs. The company operates in the Netherlands, Norway, and the U.S. Learn more at northseatherapeutics.com

Premier Infusion & Healthcare Services specializes in home nutrition, offering robust support for patients needing parenteral or enteral nutrition. Our expert team, which includes Board Certified Nutrition Support Pharmacists and Registered Dietitians, ensures individualized care, clinical oversight, timely assessments, and continuous monitoring to help patients achieve nutritional goals and prevent hospitalizations. For more information, please visit premierinfusion.com

Creator of Mobility+TM, the world’s first elastomeric tube feeding system, an exciting new option that is transforming quality of life. Mobility+TM is mobile, lightweight and silent. It delivers enteral nutrition without the need for electricity, battery backup, or gravity which allows for discreet feeding at home, in school, at work, or on the go. For more information see www.rockfieldmd.com

Featured Sponsors

Baxter International Inc. has over eighty years of experience in developing parenteral nutrition products that work together to help improve patient outcomes. Baxter offers clinicians and patients parenteral nutrition solutions, IV fat emulsions, and automated compounding systems. For more information, please visit www.baxter.com/patients/nutritional-care.

Nutrishare has been serving patients for over thirty years as the only home infusion pharmacy specializing exclusively in home PN. Nutrishare provides oneon-one concierge service with a dedicated clinician, supports domestic and international travel, and empowers patients to choose the pump and supplies that best for them. Learn more at Nutrishare.com

Exhibitor Opportunity: Oley Conference 2025

Are you interested in becoming an exhibitor at the 2025 Oley Conference? This is a great opportunity to connect with patients, caregivers, healthcare professionals, and industry leaders in the nutrition support community. Showcase your products, services, and innovations to a highly engaged audience. Don't miss your chance to be part of this impactful event! For more information or to secure your exhibitor space, please contact us at partners@oley.org