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The Oley Foundation is a home nutrition therapy community and advocacy group. WINTER 2023/2024 ISSUE

LifelineLetter

Living with home parenteral and/or enteral nutrition (HPEN)

Braver Together AMY TARPEIN

Elijah is a joy-filled five-year-old boy with a rare brain disorder, lissencephaly, and we are doing our best to care for him. When he was born, we were informed that his time was limited. The experts explained that a feeding tube could be necessary in the future, while also suggesting that we didn’t want to cause him pain or discomfort. Further, every time Elijah was intubated, the risk of airway failure increased. It was hard to imagine he might need a feeding tube, especially when he looked so plump and angelic. Taking all of this into account, I decided to hold off on a decision regarding a feeding tube. Elijah continued to eat by mouth, though as time went by, it became evident that we needed to be Elijah, 2023 more creative in finding ways for him to eat and stay healthy. Elijah’s weight was a significant concern, and we monitored it closely. He appeared to grow typically initially, but then his growth curve started to level off. By the time he was three years old, he weighed only 24 pounds, significantly below average for his age. Finding foods that Elijah could safely swallow became more complicated, and we had to become more vigilant about his diet. His surrogate dad, Mike, helped him by bringing him a nightly peanut butter milkshake, which he loved. Despite the challenges, we remained committed to caring for Elijah and finding ways to help him enjoy life as much as possible.

Getting a G-tube

When Elijah was three and a half years old, we decided to go ahead with G-tube surgery. Even though it was a scary prospect, we knew it was the best thing for him. However, we had many questions and needed help to get good answers. Spend five minutes on Google, and you’ll find a long list of potential problems but little guidance on how to solve them. On the morning of his surgery, as I stroked his hair and looked at his little body, I understood that this would be his source of strength. Despite the uncertainties, the medical team promised to guide me every step of the way. They directed me to a YouTube link. However, it was faulty, and the hospital staff needed to be CONTINUED, PAGE 4

INSIDE THIS ISSUE: 3 Tube Talk Feeding Tube Awareness Week Blenderized Tube Feeding Practice Recommendations 6 Oley Awards 7 Travel Tips 8 From the Desk of the Executive Director 11 DDNC Public Policy Forum 11 Oley Tim Weaver Camp Scholarship 13 Oley Board and Staff Updates 14 The Joan Bishop Lifetime Achievement Award 15 Advocating for Your Child 17 Dear Friend of Oley 18 Butterfly Pig Emerging Innovator Partnership 19 Corporate Partners 19 Notable Individual Contributions 20 2024 Calendar Save the Date: Oley 2024 Consumer Conference

LifelineLetter Executive Director: Beth Gore, PhD

Editor, LifelineLetter; Director of Advocacy: Lisa Crosby Metzger

Director of Development and Communications: Alaina McCormick

Manager of Education and Innovation: Maisy Cyr, MSW

Manager of National Advocacy: Andrea Taylor, RD, CNSC

Administrative Assistant: Cathy Harrington

Science & Medicine Advisor: Manpreet Mundi, MD, FASPEN

Oley Board of Trustees

Kelly Tappenden, PhD, RD, FASPEN, President; David Mercer, MD, PhD, FRSCS, FACS, President Elect; Steve Atkinson, Treasurer; John Mahalchak, Secretary; Lisa Epp, RDN, CNSC, LD; Roy George; Shirley Huang, MD; Sivan Kinberg, MD, MS, MA; Vanessa Kumpf, PharmD, BCNSP, FASPEN

Oley Advisory Council

Lyn Howard, MB, FRCP, FACP, Co-founder; Joan Bishop, Executive Director Emeritus; Rhonda Arends; Jane Balint, MD; Kevin Baskin, MD; Melissa Bill; Elizabeth Bond, RN; Lynda Bosworth; Phila Breeding, RN; Alan Buchman, MD, MSPH, FACN, FACP, FACG, AGAF; Marcia Denenholz; Terry Edwards; Paula Foiw-Washesky, RD, LDN, MBA; Madalyn GeorgeThiemann, RN, CNS; Kathleen Gura, PharmD, BCNSP, FASHP, FPPAG, FASPN; Jocelyn Hill, MN, RN, CVAA(c), OCN, CRNI, VA-BC; Joy Hugick; Kishore Iyer, MBBS, FRCS, FACS; Swapna Kakani, MPH; Barbara Kapuscinska Kelly, MD; Sue Koprucki; Laura E. Matarese, PhD, RDN, LDN, CNSC, FADA, FASPEN; Russell J. Merritt, MD, PhD; Ann Michalek, MD; Jay M. Mirtallo, MS, RPh, BCNSP, FASHP; Laurie Reyen, RN, MN; Vicki Ross, RD, PhD, CNSC; Trish Skiendziel, RD, LD, CNSC; Michael Smith; Bob and Mary Smithers; Ezra Steiger, MD, FACS, FASPEN; Marion Winkler, PhD, RD, LDN, CNSC

Subscriptions

The LifelineLetter is a quarterly newsletter available free of charge at oley.org. The newsletter is available by mail upon request. Items published are provided as an open forum for the home parenteral and enteral nutrition (HPEN) community and should not imply endorsement by the Oley Foundation. All items/ads/suggestions should be discussed with your healthcare provider prior to actual use. Correspondence can be sent to the Editor at the address on the left. Medical/scientific content contained herein has been peer reviewed by an Oley advisor or trustee.

Our Mission

. . . is 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 28,000+ 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.

Oley Foundation Programs • LifelineLetter • Peer to Peer Support • Conferences and Webinars • Resources to Promote Living Well on Tube Feeding and IV Nutrition • Enteral Donation Program • Advocacy and Awareness

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.

@the_oley_foundation

@the-oley-foundation

@theoleyfoundation

@TheOleyFoundation

LIFELINELETTER

LifelineLetter Winter 2023 • Volume 44, No. 4 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

TUBE TALK

Send your tips, questions and thoughts about home tube feeding (enteral nutrition or HEN) to us at info@oley.org. Please indicate it is in regard to Tube Talk. Information shared in this column represents the experience of the individual and, while medical information is reviewed by an advisor, should not imply endorsement by the Oley Foundation. The foundation strongly encourages readers to discuss any suggestions with their clinician before making any changes in their care.

Feeding Tube Awareness Week, February 5–9, 2024 Your participation can...

• Help others understand what life with feeding tubes and enteral nutrition is all about. @the_ • Increase tolerance and knowledge. @theoleyoley_foundation foundation • Create bridges to people who are feeling isolated or struggling with tube feeding. @ the-oley-foundation

Blenderized Tube Feedings: ASPEN Practice Recommendations Over the past several years, there has been increased interest in and use of blended foods for tube feeding. Today, the term blenderized tube feeding (BTF) is widely used to refer to food and liquid blended into a puree thin enough to be given via a feeding tube. Recognizing that BTF is being used more and more often in both the home and hospital settings, the American Society for Parenteral and Enteral Nutrition (ASPEN) Enteral Nutrition Committee has developed practice recommendations based on current research to help guide patients and nutrition professionals in the use of BTF. The recommendations are based on seventy-nine articles published between 2016 and 2021 that the committee identified as relevant to BTF. We recommend you look at the article, which will soon be available on the ASPEN website, if you are on tube feeding, caring for someone on tube feeding, or are even remotely considering BTF. Here, in one place, are gathered the most essential points from a broad selection of current literature. You’ll find a discussion of the pros and cons of commercial vs. homemade BTF, including why some people have chosen BTF; using BFT with different types and sizes of tubes, with pumps, and with varying methods of delivery; BTF consistency, and flow rates; how to prepare and store

BFT safely; recommended hang times for BTF; recipe guidance and possible additives for BTF; using BTF in the hospital setting; and the follow-up, lab tests, and monitoring that should occur or that one could expect. The recommendations are titled “Blenderized tube feedings: practice recommendations from the American Society for Parenteral and Enteral Nutrition,” by L. Epp, A. Blackmer, A. Church, et al., and were published in Nutrition in Clinical Practice in 2023 (doi:10.1002/ncp.11055). The paper’s authors wish to note that the expert practice recommendations should not be confused with guidelines. Clinical evidence is still lacking in many areas discussed, and the recommendations rely mostly on weaker literature and expert opinion. The recommendations do not constitute medical or other professional advice and should not be taken as such. The complete article, found at www.nutritioncare.org/ Guidelines_and_Clinical_Resources/Enteral_Nutrition_ Resources, is in a very usable format and with tables and graphics that help explain the recommendations. The recording of a presentation on these recommendations given at the Oley 2023 conference in St. Louis, Missouri, by Lisa Epp, RDN, LD, CNSC, is available on YouTube at youtu. be/rXm67f-Kzc0.

Wishing you the gifts of the season—

P E AC E , J OY, H O P E

VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 3

Amy and her family at Elephant Rocks State Park, Belleview, Missouri, 2021. From left to right: Amy, Avayha, Mackenzie, Kaylynn, Elijah, and Isaiah

Braver Together, continued from cover made aware of the technical issue, leaving me feeling lost and confused. After Elijah underwent surgery, I felt overwhelmed with a sense of responsibility and uncertainty. I didn’t know what to expect or how to deal with everything that followed. The nurses were constantly in and out, taking care of various things and ensuring everything was under control. I found it difficult keeping up with everything, especially since I simultaneously had to look after my sleepy and upset toddler. One of the nurses eventually took some time to explain everything to us, but it was a brief explanation and I couldn’t retain much of the information. They kept referring to the YouTube link. I assumed it would provide me with additional information, but unfortunately, it still wasn’t working. The entire experience left me feeling more anxious and uncertain about what to do next. During the first three days after we started using the pump, the medical staff tried to adjust it because Elijah kept vomiting after just thirty minutes of being on it. Unfortunately, the efforts of the staff didn’t help, and the situation didn’t improve. Despite this, we were still discharged from the hospital, which left me very concerned about Elijah’s condition. Before leaving, the medical team instructed me to refer to another YouTube video if I needed help operating the pump. When I tried to watch the video, it wasn’t functioning correctly, adding to my worries. I raised my concerns again to the team, but nothing was done to address the issue.

Back Home

After we returned home, we were looking forward to finally relaxing into a new normal. Unfortunately, things did not go as planned. Every time Elijah used the pump, he would experience excessive saliva, retching and vomiting, making it almost impossible for him to tolerate the device. We immediately contacted experts for help but we didn’t receive much assistance. For a whole week, we desperately tried to find advice or a solution to Elijah’s problem. We searched online, read medical journals, and watched YouTube tutorials, but nothing 4

LIFELINELETTER

Elijah (center) with Avayha, Mackenzie, and Isaiah at the American Gothic House in Eldon, Iowa.

Elijah’s Baby Bucket List Elijah is quite the celebrity, not just among his nine older siblings! His devastating diagnosis led his single mother, Amy, and his siblings to create a bucket list to fill his lifetime with as much happiness and adventure as possible. Elijah’s story has appeared on TV and radio, in print and online. He has over half a million followers from around the globe on social media platforms. His followers read about his latest experiences and enjoy videos of his infectious laughter and smile. “Elijah is always happy, always laughing. It’s hard to stay sad when he’s around,” says Amy. “He is unconditional love and the embodiment of pure joy.”

Bucket List Adventures Knowing Amy has a lot of experience traveling to places on Elijah’s Baby Bucket List, we asked her to share some of the things she and her family do to save money while traveling. We’ve compiled more tips on traveling on page 7. Amy’s tips: • We use reward points to get free hotel stays and save money on gas. • We eat breakfast and sometimes dinner at the hotel. Or prepare meals in our hotel room to save money on food. • When we eat out, we use coupons and look for discount codes that help provide cost effective meals. • We skip drinks and buy our own from a grocery store or bring refillable water bottles. Drinks often add more to the cost than the food when dining out.

worked. We did everything possible to make the pump more bearable for Elijah, but nothing helped. When we returned for our follow-up appointment, we were shocked to learn that Elijah had lost a pound. He was unable to handle the pump. The medical staff was equally surprised, as they had

dose of erythromycin. It worked wonders for Elijah. Within not anticipated such a negative outcome. We felt helpless and twenty-four hours, he had stopped vomiting and he has frustrated and wished we had received more support during gained 10 pounds in the last year. this difficult time. Elijah was admitted to the hospital and given an IV. They still A Plea for Collaboration tried to feed him with the pump, and he continued to vomit. There has to be a better way to help doctors and patients We were sent home three days later. They told me to “keep learn how to deal with complex issues that can be solved and playing with the pump,” to figure out what worked for him. It quality of life restored. There must be a practice so people are was two more weeks of me trying everything I could at home. not alone in this journey, a map to available resources to help With daily calls to the hospital and him vomiting so much, I support you and your family. thought, what did I do? He might die, and it is because I went We are braver together! People need a trusted community, ahead with this tube. We were back in the hospital three especially when going through significant life struggles. We times in a month. need resources, answers, and a safe place like Oley to go for The last time in the hospital, Elijah was septic from kidney those—a place that aims to provide education, advocacy and infection, dehydration, and kidney stones. That is when I Googled alternatives to the pump. I researched everything I could. I spent a lot of "We are braver together! People need a time reading medical journals, blogs, and any trusted community, especially when going relevant information I could find. My goal was to learn as much as possible about how the through significant life struggles." stomach works so I could find a way to help Elijah. After much research and experimenting, I discovered that support services accessible to everybody along their journey. he could tolerate a fast bolus feed. It was a significant relief Bad experiences are an opportunity to learn how to do because he stopped vomiting every time he ate. However, things better. As Oley Foundation Executive Director Beth Gore he still experienced some vomiting at night, which was says, “The things we go through don’t have to be repeated by concerning. others if we do it well.” To address this issue, I contacted our GI department and Two Years Later spoke to the nutritionist dietitian every day for guidance and Some things can’t be fixed, only carried, no matter how well support. Despite a lack of ideas, I continued with my pleas for intentioned you are. Today, five years old, Elijah continues help. I remained determined to find a solution, knowing that to beat the odds. And while this was not my plan, I am truly we could overcome any obstacle with effort and collaboration. blessed to be his momma. I can’t explain half the stuff that After we sought a second opinion at a different hospital, a happens in our lives, but I know we are braver together. v new doctor discussed motility with us and prescribed a low

Reaching New Heights Elevate your compounding with APEX® Compounding System

VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 5

2024 Oley Awards Please nominate someone who inspires you at oley.org/nominations! The annual Oley Awards are an opportunity for the professional and consumer members of the nutrition support community to recognize those who have earned our respect, inspired us, and taught us. Award recognition is at the 2024 Oley consumer conference in Tempe, Arizona, June 29–July 2. The winners will receive $750 to offset the expenses of attending Oley’s 2024 conference (provided as reimbursement after the conference) courtesy of the corporate sponsors listed below. Please notify the person you nominate for the award. The deadline for nominations is March 18, 2024.

HPN Hero Award

Sponsored by Nestlè Health Science

• Current home enteral nutrition (HEN, or tube feeding) consumer for 1 year or longer • 18 years of age or older • Demonstrates courage, perseverance, and a positive attitude in dealing with their illness and living a more fulfilling life on HEN

Rising Star Award Sponsored by Abbott

• Current home parenteral and/or enteral nutrition (HPEN) consumer for 1 year or longer • Under 18 years of age • Shows a positive attitude in adapting to life on therapy which encourages and inspires others

Caregiver Extraordinaire Award Sponsored by VectivBio

• Caregiver or support person to an HPEN consumer for 1 year or longer • Demonstrates patience, compassion, dependability, and provides effective care in helping a consumer on HPEN • Advocates for the consumer to help them live more fully on HPEN

By your side and beyond

Coram®* is here for you. At Coram, our dedicated team of clinicians and pharmacy staff provide personalized support and ongoing care to our enteral consumers across the country and home parenteral consumers in many markets. Visit CoramHC.com to learn more.

Want to get started with Coram? Talk to your doctor or call us at 1-800-423-1411.

LIFELINELETTER

Kangaroo OMNI™ Enteral Feeding Pump

Explore the future of enteral feeding Get started

Travel Tips We hope you will join us in Tempe, Arizona, for the Oley 2024 Connected Consumer Conference, June 29 to July 2, 2024. Hotel and registration details will be posted at oley.org soon. In the meantime, we’ve put together some ideas to get you thinking about how you might plan—and afford—your trip.

The Conference

• Conference registration is free for home nutrition support consumers, caregivers, and family members. • A discounted room rate will be available when you register through the link Oley will provide. We are excited to share the negotiated rate is $125/night, so you can start budgeting now. • Oley will be expanding our conference travel grant program with more details available soon with registration.

Traveling Economically

• Check for flights into Sky Harbor (PHX) and Mesa Gateway (AZA) Airports (skyharbor.com and gatewayairport.com). • Check websites such as Google Flights, Hopper, Kayak, Priceline and Skyscanner to compare prices. Many of these sites will allow you to set up notifications to alert

The Oley Foundation’s 38th Annual Consumer Conference

Connected

June 29, 2024 | Tempe, AZ

you to price reductions. Many also allow you to try flexible travel dates to see if flights may be cheaper on another date. • Check individual airlines’ websites. Some airlines don’t show up in search engines such as Google Flights. • Watch out for added fees, such as for checked luggage, carry-on items and seat selection. Medical supplies should be free, but the bag/box must contain only medical supplies (i.e., don’t include a change of clothes with your pump bags).

Apps and Perks

• T-Mobile has an app called T-Mobile Tuesdays that lets users get discount codes, including codes for rental cars and gas. • The Shell Fuel Rewards app allows users to get discounts on gas and can be linked to other loyalty programs for additional savings. • Check your credit card rewards programs before traveling to see if bonus points or discounts are available for hotel stays or attractions, or gas, hotel, restaurant, or other purchases.

For tips on traveling with home IV nutrition and tube feeding supplies, visit oley.org/page/TravelTipsHomePEN.

We want to make sure you have the updates you need to confidently support our work with trust and confidence. Thank you.

Introducing the BLENDERIZED

TUBE FEEDING RECIPE BUILDER

Build your own blenderized tube feeding recipes at home! Take the guesswork out of creating blenderized tube feedings with our simple online tool that allows you to customize recipes from scratch tailored to your nutritional needs and preferences.

Create your free account at .com/ blend-at-home and start blending at home today!

Driven by recipes developed by Robin Cook, MS, RD, CSP, LDN, Pediatric Surgical/ Trauma Dietitian at Children’s Hospital of Philadelphia

USE UNDER MEDICAL SUPERVISION The Blenderized Diet Recipe Calculator was created by Robin Cook, MS, RD, CSP, LDN, and is reproduced with permission under a licensefrom Children’s Hospital of Philadelphia. No endorsement by Children’s Hospital of Philadelphia or by Robin Cook, MS, RD, CSP, LDN, of any Nestlé Health Science brand or product is implied or intended. All trademarks are owned by Société des Produits Nestlé S.A., Vevey, Switzerland or used with permission. ©2023 Nestlé.

VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 7

From the Desk of the Executive Director BETH GORE, PHD, OLEY EXECUTIVE DIRECTOR Do you do this too or am I the only one? I consciously choose to live my life on purpose. Maybe that sounds strange, but I meet a lot of people who feel like they only have life happen TO them. I’m a person of intentionality. Sure, sometimes the unexpected waves of life knock me to my knees. After all, I’m the mother of Beth Gore six children who all have special needs. I’ve learned to expect the unexpected. But I also have moments between the waves where I can reflect and make course corrections. I once heard the saying, “The days are long, but the years are short” (author unknown). As that mother of six, and as the Oley Executive Director for just over a year now, I feel that in my bones. It’s why I have to intentionally reflect on the year point of view and not just the day-to-day grind. Annually, near the end of the year, I reflect on where I am, where I’ve been and where I’d like to go in the next year. I take a good, hard look at the wins and areas for improvement for my life. In November 2023, the Oley Board of Trustees gathered in Tempe, Arizona, the site of the Oley Annual Conference for June 29–July 2, 2024. We reflected on just that: The past and future of Oley and the nutrition support community.

The Past Year, 2023

Oley was involved in a lot this past fiscal year (October 1, 2022, to September 30, 2023). Some of the highlights include: • Annual conference. This was huge! We held the first in-person annual conference in four years. o Attendance—We were not sure people would still gather in person in a post-covid world. But they did. Nearly 400 people registered and 317 attended in person. o 40th—With Executive Director Emeritus Joan Bishop transitioning out, we focused on the 40-year history of Oley during the keynote address, presented by Joan and Oley Foundation Co-Founder Dr. Lyn Howard. o New activities—We attempted some fun, new traditions, like the fashion show and karaoke. Both were huge hits. We expect them to make a showing next year. o Financials—For most organizations, their annual conference is a money maker. Oley does not charge families and patients to attend the conference. Therefore, it has always been a big deficit to put on the annual conference. In 2023, our goal was to break even. And

LIFELINELETTER

for the first time in Oley history, I’m happy to report, we did! Thanks to the generous support of our supporters, attendees, partners, exhibitors and sponsors. o Hope you’re making plans to join us in Tempe, Arizona, and get Connected.

The Oley Foundation’s 38th Annual Consumer Conference

Connected

June 29, 2024 | Tempe, AZ

Oley 2023, Gateway to the Future, St. Louis, Missouri • Education. Oley presented many powerful and meaningful educational opportunities. Just to highlight a few: o The patient perspective symposium at ASPEN, “Partnering with Patients: An Ace Up Your Sleeve.” o Webinars/Mini-Meetings on the topics of insurance, blenderized tube feeding, mental health, intestinal failure, tube feeding/infusing at work and school. o Four LifelineLetter newsletters with clinical highlights and patient perspectives. • National advocacy. The theme of 2023 seemed to be mitigating continued shortages. This includes the on-going enteral formula shortages as well as parenteral nutrition shortages, “the worst in decades,” and device supply chain challenges. Oley was involved in congressional conversations, spoke with payors at a payor summit and was invited to have a seat at the table at a supply chain summit. Oley continues to serve on the advisory board for LIFT-ECHO. Oley staff and members participated in the Digestive Disease National Coalition (DDNC) Spring Public Policy Forum and Capitol Hill visits as well as DDNC’s Fall Forum. Director of Advocacy and Outreach and LifelineLetter Editor, Lisa Metzger, served as the DDNC vice chairperson. Oley cosigned community letters in support of the Safe Step Act, sent letters of support to state Medicaid offices on policies, and continues to be part of the Patient and Providers for Medical Nutrition Equity Coalition. • Community. The Oley community is unique as the only group that bridges patients to and from nutrition support fellow patients and caregivers, clinicians and industry. We give as many opportunities as we can for these groups to interact in meaningful and intentional ways. Some of the

programs we run for patient to patient include information requests, our Oley Ambassador Network, the Enteral Donation Program and various support groups. • Innovation. We launched the Emerging Innovator Program and have our first two partners: FreeArm and Butterfly Pig. Visit bit.ly/OleyPartnerBenefits to learn more. • Staff. Oley is pleased to announce we have hired Alaina McCormick as the new Director of Development and Communications. She has both personal and professional relationships within the home nutrition support community and has been connected with Oley since 2005. Learn more about Alaina on page 13. • Board members. Due to the transition of the Executive Director and all Oley officers in Oley’s fiscal year 2023, the decision was made to hold off on adding more board members to the mix. We are pleased to announce the incoming board members, officers and advisors. These positions went into effect October 1, 2023. The Board of Trustees is listed on page 2, with more information about each board member available at oley.org/Board. See page 13 to learn more about our newest trustees. We also did not meet some of the goals we had set for ourselves. Times were tight in fiscal year 2023 for donations. By tightening our belt and frugal spending, we were still able to come out of it with a balanced budget. Staff changes caused some unexpected delays in programs we were hoping to launch and improve during 2023. But the staff we did have were willing to work extra hours to make sure we did not fall even further behind. We believe we have a great staff in place. We had overly ambitious goals in terms of a timeline for upgrading our website. Due to unforeseen challenges, we had several delays in technology upgrades. We now feel like we have a more realistic timeline and the staff in place to pull this off.

The Oley Foundation Board of Trustees and Board Advisors. Back row (left to right): Tim Arends, David Mercer, Kelly Tappenden, Manpreet Mundi, Steve Atkinson. Front row (left to right): Vanessa Kumpf, John Mahalchak, Lisa Epp, Sivan Kinberg, Roy George. Not pictured: Shirley Huang.

The Oley Board of Trustees has set two main priorities for fiscal year 2024: 1. Annual conference. Oley staff was given directions from the board to make 2024 the best conference ever. We were given the ADVOCACY: Be the voice to, of and for following sub-priorities: the people on home nutrition a. Record number of patient and caregiver therapy and their caregivers. attendees, especially first-timers EDUCATION: b. Record number of travel scholarships Create and disseminate patient-focused best practices for c. Make money during the conference home nutrition support. 2. Technology, communication and infraCOMMUNITY: structure modernization. Unite, support and empower everyone involved in home nutrition a. Our website is in need of updating. therapy in an inclusive, diverse and accessible environment. We have secured the contract to upgrade and will begin construction on INNOVATION: that ASAP. Support the patient-centered improvement and evolution b. You’ll also see continued upgrades on of nutrition therapy and enable patients to live the things like our social media platforms and best life possible. general communication platforms and general

STRATEGIC PLAN 2023-25 TRUSTWORTHINESS:

We will be credible, transparent and act with integrity.

MISSION STATEMENT: To enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation. VISION: Oley envisions a world where patients are united, supported and empowered to thrive on home nutritional support.

VALUE S

ITIATIVES

COMPASSION:

The Future Year, 2024

modernization and accessibility features to everything we do. While these are our top priorities from now through our annual conference, this does not mean we will lose focus on other areas of importance. We will still be working on our strategic plan with the pillars of Advocacy, Education, Community and Innovation. The staff and I take the job very seriously that we are the voice to, of and for those on nutrition support. To aid in this, the board has established a Clinical Advisory Committee to steer the direction of advocacy and education efforts. We began 2023 by celebrating Oley’s 40th anniversary. We begin 2024 by asking where we will be 40 years from now. During our strategic planning session, I asked the board where they saw the challenges facing our community. Most were in the category of national advocacy. Some of the broader themes were shortages, minimal standard for nutrition supCONTINUED ON NEXT PAGE

We will keep the voice of the patient central to our mission.

INCLUSIVITY:

We will be accessible and accountable to all stakeholders in the nutrition support community.

PROACTIVITY:

We will promote improvements in the ﬁeld based on patient priorities.

Approved by the Oley Board of Trustees November 2022

VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 9

From the Desk of the Executive Director, continued from previous page port care, disparities, barriers to access, insurance challenges, the need for more innovation, and distance to knowledgeable teams. As staff, we daily hear the plights of the patients and families we serve. You are not alone. There are mountains of issues facing our community. We need you. I’m reminded of the African proverb, “If you want to go fast, go alone. If you want to go far, go together.” If I were to share my personal vision for Oley, it’s this quote. We are better together. In a year from now, I hope to be celebrating all the amazing wins for our nutrition support community. Won’t you join me in writing that story? How do YOU want to contribute this year to Oley?

There are mountains of issues facing our community. We need you. I’m reminded of the African proverb, “If you want to go fast, go alone. If you want to go far, go together.”

At Zealand Pharma we have been discovering and developing next-generation peptide therapeutics for 25 years. We also have a commitment to people living with short bowel syndrome.

Financial Donations

• Annual end-of-year donations or towards the annual conference travel scholarships can be made at oley.org/ donations. • Refer us to a company that might be interested in becoming a partner or exhibiting at our conference. • Learn how to become a Horizon Society member. Visit oley.org/plannedgifts. • Check with your employer about gift matching.

At the Oley Annual Conference 2024 we look forward to sharing new insights from our Phase 3 clinical trials with glepaglutide for the treatment of short bowel syndrome.

Volunteer

• Stay tuned for volunteer opportunities.

Thank you for being a valued member of our community! v

Proud Supporter of the Oley Foundation Our ASPEN award-winning, clinical nutrition team is committed to top-notch care for patients regardless of complexity. You can expect comprehensive support to help you reach your nutritional goals.

www.zealandpharma.com

AmeritaIV.com

10 LIFELINELETTER

Glepaglutide is an investigational compound whose safety and efficacy have not been evaluated or approved by the FDA or any other regulatory authority

DDNC Public Policy Forum

March 3–4, 2024 | Washington, D.C. We invite you to join us at the Digestive Disease National Coalition (DDNC) Spring Public Policy Forum, March 3–4, 2024, in Washington, D.C. The Spring Public Policy Forum brings together patient advocates, healthcare providers, and industry and professional society representatives concerned with digestive diseases. On Sunday, March 3, attendees, including Oley Foundation staff and volunteers, will hear from leaders in the digestive disease community and learn about key legislative issues impacting the community.

On Monday, March 4, attendees will share their stories and advocate for digestive disease research and improved patient care in meetings with congressional offices on Capitol Hill. You can register for and find more information about the DDNC Public Policy Forum at ddnc.org/public-policy-forum. There is no charge for participating. Questions? Need more information? Contact us at (518) 262-5079 or info@oley.org.

Oley Tim Weaver Camp Scholarship Sponsored by Fresenius Kabi, USA, the $1,000 Oley Tim Weaver Camp Scholarship was created to provide youth on home IV nutrition and/or tube feeding (home parenteral and/or enteral nutrition, or HPEN) the chance to experience summer camp, building selfconfidence, independence, courage and creativity in a safe environment. Applicants must be an HPEN consumer aged 7 to 18, and qualify for a camp that provides HPEN medical support. First-time campers will be given first consideration. Applications are accepted on an ongoing basis. For details, go to oley.org/campscholarship. Austin and Ellie, 2017 Scholarship Winners VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 11

SPEAK ONE-ON-ONE ABOUT SBS TO A PATIENT OR CAREGIVER WHO UNDERSTANDS

LEARN ABOUT personal experiences with SBS and a potential treatment option

HEAR STORIES about the SBS journey

RETA, LIVING WITH SBS SINCE 2012

KAT, LIVING WITH SBS SINCE 1972

ASK QUESTIONS on how caregivers can provide support PEGGY, LIVING WITH SBS SINCE 2013

REID, LIVING WITH SBS SINCE 2019, WITH HIS MOM, JODI

YOU’RE NOT ALONE IN THIS JOURNEY

TALK DIRECTLY TO SOMEONE ELSE WITH SBS

CLICK HERE OR SCAN THE QR CODE TO TALK TO AN SBS MENTOR Not intended for medical advice. Always consult a physician.

12 LIFELINELETTER

Oley Board and Staff Updates The Oley Foundation is excited to introduce you to Roy George and Dr. Sivan Kinberg, Oley’s newest board members, and Alaina McCormick, Oley’s newest staff member.

Roy George

Roy George joined the Oley Board of Trustees this fall. Roy writes, “I am thrilled to be sitting on the board of trustees of an organization I have had the privilege of growing up with.” Roy is accomplished in many areas, including podcasting, composing, lyric writing, producing, directing, music directing, and conducting, as well as other roles in the music industry. Roy spent some time in New York City, where he honed his musical skills and also became a social media marketer and personal assistant. Roy hopes to attain another degree in music business. Roy currently feels that his voice on the board is “wildly unique.” As a home nutrition support consumer and patron of the Oley Foundation, he feels he can use his strengths from his personal life to have an active, strong and helpful voice on the board to help Oley continue on in the direction of longevity. Roy writes, “I am proud of the forty-year organization that is Oley and am also excited to be a unique part of the next forty years. It is an honor and a privilege to sit on the board and I am grateful for the opportunity to work with the incredible members, staff, and Oley Foundation family!”

Sivan Kinberg, MD, MS, MA

Dr. Kinberg is an Assistant Professor of Pediatrics, a pediatric gastroenterologist and the Director of the Pediatric Intestinal Rehabilitation Center at Columbia University Irving Medical Center in New York, New York. Leading a dedicated multidisciplinary team, Dr. Kinberg provides comprehensive care to infants, children and young adults with short bowel syndrome and intestinal failure, emphasizing holistic medical, surgical, nutritional and psychosocial support. Dr. Kinberg has a special interest in the transitions of care that occur for a patient with short bowel syndrome and/or intestinal failure throughout their lifespan. She founded the GUTSY Transition of Care Program at Columbia—a first of

its kind—which focuses on assessing transition readiness of adolescents and young adults, providing them with targeted education, and equipping them with self-management skills. Dr. Kinberg also holds a joint appointment as an Assistant Professor of Clinical Informatics and is the Program Director of the Clinical Informatics Fellowship Program at Columbia University Irving Medical Center. Board certified in pediatrics, pediatric gastroenterology and clinical informatics, she actively engages in clinical research and educates patients, caregivers and other healthcare providers. Driven by a passion for advocating on behalf of her patients and their families, Dr. Kinberg writes, “As a pediatric gastroenterologist, my role is not only to make children grow but also to see them thrive! Joining the Oley Board of Trustees is a genuine privilege, and I am honored to stand with you all. My aspiration is to make a meaningful impact on a broader scale through education, advocacy and empowerment.”

Alaina McCormick

In October, Alaina McCormick joined the Oley staff as the Director of Development and Communications. Before joining Oley’s leadership team, Alaina managed a consumer nutrition advocacy program and was the Consumer Sales Manager for Optum Infusion Pharmacy. During the three years before it was acquired by Optum, Alaina oversaw the direct-to-consumer marketing efforts for ThriveRx, a national parenteral nutrition home infusion pharmacy. She is also a parent as well as the primary caregiver to her two children, boy/girl twins, with multiple health challenges. Alaina and her daughter, Ansley, had been active members of the chronic health community before Ansley died in 2020. Ansley was on parenteral (IV) nutrition and IV hydration therapy for almost five years and enteral nutrition (tube feeding) for fifteen years. Alaina’s son struggles with autoimmune disease and OCD. Alaina has an extensive advocacy and caregiver support history, from her initial volunteer opportunities with the American Partnership for Eosinophilic Disorders (APFED) to her personal and professional passion for helping those on nutrition support and IV therapies thrive and cope with chronic illness. Alaina brings a skill set to the organization that will help modernize and grow Oley, as well as her lived experience navigating complex health needs and resources in the U.S. healthcare ecosystem. v

VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 13

MARCH 2-5, 2024 TAMPA CONVENTION CENTER AND VIRTUAL

SO MANY OPPORTUNITIES

▸ Keep up with the latest research

and evidence-based practices in nutrition support ▸ Join live presentations, discussions, and chat rooms ▸ 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 aspen@nutritioncare.org to register at discounted rate

nutritioncare.org/conference

The Joan Bishop Lifetime Achievement Award NOMINATE SOMEONE TODAY! Established in 2023 to honor Joan Bishop, who served the Oley Foundation and its community for almost forty years before her recent retirement, this award will be presented at the Oley Foundation’s annual consumer/clinician conference to a person who has dedicated their time, talent and passion to advancing the field of home nutrition support therapy across the decades. The award will be given to a person who has gone above and beyond in their years of selfless dedication to working towards advancing the mission of the Oley Foundation. It is the only award decided and presented by the Oley Board of Trustees, and may not be presented every year. Please consider nominating a consumer, caregiver or clinician for the 2024 Joan Bishop Lifetime Achievement Award. Visit oley.org/Joan_Bishop_Lifetime_Achievement_Award for more information and nomination form.

Criteria for Award

Nominee must: 1. have been involved with home nutrition support therapy for over a decade; 2. be an Oley Foundation member; 3. have consistently demonstrated admirable activities which advocate for themselves or others receiving enteral nutrition (tube feeding) or parenteral (IV) nutrition. Additionally, it is recommended that the award winner or their representative should be able to attend the 2024 conference in order to receive the award in person, and be able to briefly articulate their story at the conference at the award ceremony. There is no cash prize associated with this award.v

The Oley Foundation is presenting a symposium at the ASPEN 2024 Nutrition Science & 9/5/23 11:51 AM Practice Conference on March 2, 2024, in Tampa, Florida. Details coming soon to oley.org, Facebook, Instagram and LinkedIn. Stay tuned! 14 LIFELINELETTER

ASPEN24_Oley_3.66x9.315.indd 1

ADVOCATING FOR YOUR CHILD This summer we received a copy of the following letter from a parent who explained that they had sent it to the administration and surgery clinic at the hospital where their daughter had been seen. They continued, “If it will save anyone from going through the same or a similar thing, we would like it to be published.” We are sharing it in the hope that you will find it helpful. July 8, 2023 M. has asked us as her parents to write this letter not only to support her, but also in hopes that no other patient will have to endure what she has gone through the past couple of years following complications of her central vascular line (CVL) placement. M. has a rare form of intestinal failure called neuropathic chronic intestinal pseudo-obstruction, diagnosed at approximately four months of age. She requires parenteral nutrition (PN) to maintain nutrition and thus her life. M.’s first central line was placed in her right internal jugular in September 2007, while she was a patient in the NICU. The external stay suture was removed while she was still in the NICU. This line lasted until April 2009 when it fractured over the clavicle due to her growth. In April 2009, a new CVL was placed in the left subclavian. Again, the external stay suture was appropriately removed within the first two months after placement, at a clinic visit. Amazingly, despite several repairs, M. kept this line until February 2014, when it fractured near the exit site. It was replaced, again in the left subclavian. The right subclavian was attempted but could not be used at that time. And again, the external stay suture was removed during a subsequent clinic visit, within the first few weeks to months following placement.

“Maintaining central line access is critical to M.’s survival.” M. was able to keep this line for approximately five years, which we are told is unheard of and is a testament to the excellent home care she has received. Maintaining central line access is critical to M.’s survival. She has only had one line infection, and it was successfully treated while preserving her central line (it did not have to be pulled). This line began leaking internally in August 2019 and required replacement on her twelfth birthday. The new line was placed in the right

subclavian. M. was pre-pubescent, having no breast tissue, at the time of this surgery. It certainly could have been anticipated that she would continue to grow as she previously had and that she keeps a central line on average of three to five years. And we know, based on her history, that she will likely need a line the rest of her life. To our recollection no follow-up appointment was made following this line placement. For some reason, the external stay suture was left in. As M. continued to grow, beginning around June 2020, granulation tissue began to grow at the exit site. The site was red and sore and M. had mild pain, which she dealt with on her own as she was told this was “normal” and there wasn’t anything that could be done. The suture could have easily been removed at this time. In October 2021, the pain, discharge, and redness became so bad that we went to the ER with concern of a tunnel infection after speaking with the GI team that managed M.’s care. Blood cultures were drawn, and we were told there was nothing that could be done other than taking ibuprofen or Tylenol. M. is unable to take ibuprofen due to GI bleeding and we try to avoid Tylenol because she has some PN-associated liver issues. M. was told that she should not be experiencing any pain because sutures, central lines, and granulation tissue “do not cause pain.” We were scheduled to go to the surgery clinic in October. There, we asked that the suture be removed because it seemed to us to be the main cause of the granulation tissue. We were told that the suture could not be removed because it “was holding the line in.” We had never been told this before and assumed that something had changed or was different with this line than every other line she had previously had. In other words, we trusted and believed what we were told. CONTINUED ON NEXT PAGE VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 15

Advocating for Your Child, continued from previous page piece of blue suture poking through the newly grown granuAgain, we were told there was nothing that could be done and that she should not be in pain from her line, the sutures or the lation tissue. After this we spoke with the doctor again. It was granulation tissue. The suture could have been removed at this decided to attempt to remove the remaining suture by placing time. M. under anesthesia again on June 15. Again, we had to wait for an opening in the OR. The doctor’s comment in the post-op As M. continued to grow (thanks to several of her doctors) consultation room was something like, “I don’t know who put in height and began to develop breast tissue, her skin and the that line in, but I would have never used that much suture or granulation tissue grew over these sutures and her discomfort left it in like that.” She commented that it was so tight that it and pain, the oozing, redness, etc. continued to worsen. Evwas “strangling the line.” We can still see an indentation in the ery time we would do a dressing change, it would cause her line. immense pain to move or even touch the line. It was difficult The very next day M. could tell that she was better. The docto keep a dressing on for more than a couple of days. This is a child who has dealt with intestinal and abdominal pain her tor was so concerned that M.’s pain would be much more inentire life. tense following the second procedure because she had had to dig so much further up the line into M.’s skin to retrieve the Every time M. rode her horse, she would complain that her suture. She had given M. oxycodone and had to put several right shoulder hurt. This got worse and worse until January of dissolvable sutures in to hold the dug-out skin together. How2023, when we decided that we could no longer continue to ever, M. did not require any pain medication whatsoever. She “just deal with it.” We saw the same doctor in January that we was up and moving around and moving her arm more freely had seen previously, and her comment NOW was that the suthan she had in two years. ture “wasn’t doing anything but causing the granulation tissue It is painfully obvious that the suture was causing the issue to grow.” We asked ourselves, what? all along, just as we suspected. For two years this child has At this point the suture was underneath skin and granulation been gaslit by being told that granulation tissue does not hurt, tissue and was not accessible until the site had been treated and sutures do not hurt. We have the sutures in a specimen with silver nitrate, which was done that day in clinic. This was jar, and they are hard as a rock and stiff like barbed wire. There very painful due to needing to move the line around to get is no doubt in anyone’s mind that this was causing the probunderneath and all around it. M. was in tears and extreme lem. M. has had a central line her entire life and never had any pain, and was highly anxious. We continued to painfully treat that were painful until this one. the granulation tissue at home on January 11, 18, 23 and 29, and February 5, 13 and 19. Each treatment was painful and her We were able to attend the Oley Foundation conference chest, arm and shoulder were uncomfortable and painful. It in St. Louis, Missouri, June 27–30, 2023. This is a conference reached the point where she missed school because she could for patients, caregivers, clinicians and suppliers of patients on not comfortably “move her arm.” It was torture. After treating enteral and parenteral nutrition. At this meeting, Dr. David it with silver nitrate, the granulation tissue would grow back Mercer spoke on central line access and complications. Dr. within hours to days. Mercer is a multivisceral transplant surgeon at Nebraska Medical Center. He has done many intestinal transplants. On February 22, 2023, they attempted to remove the suture However, one of his main goals is to keep patients like M. from in clinic. M. was in so much pain and crying that there was needing an intestinal transplant by maintaining CVL access and absolutely no way the removal could be done. On March 7, limiting complications from PN (liver failure and sepsis). 2023, we were forced to visit the ER again because M. woke in so much pain that she could not move her arm. Again, she During the Q&A period, I asked Dr. Mercer how long the missed school and both of us missed work. Once again, we were told there was nothing that could be done to help her. So, we sought a second opinion. After a long consultation and the doctor saying, “I do not want to hurt you,” a decision was made to put M. under general anesthesia to remove this suture in an attempt to save the line. This procedure was done on April 13. This was the first opening in the OR. She was very sore and uncomfortable for Oley Oley Foundation Foundation Conference Conference about a week following and some of St. St. Louis, Louis, Missouri Missouri || June June 27–30, 27–30, 2023 2023 the pain had subsided, but it was not Presentation: Presentation: “The “The Patient’s Patient’s Voice Voice in in Vascular Vascular Access” Access” completely resolved. Within ten days, we saw another 16 LIFELINELETTER

external “stay” suture should remain in following CVL placement. His response was that it could be removed once the cuff has grown in—approximately three to six weeks to be safe, but one week would probably be ok. The internal cuff is what “holds the line in,” not the external suture. If you would like to view the video of his presentation, it is available on the Oley Foundation YouTube channel (search “The Patient’s Voice in Vascular Access” or go to youtube.com/ video/euKmAeWUHZ0). His answer to my question is at approximately 42 minutes. Consider watching the entire video as you will learn so much from the patient perspective and from Dr. Mercer’s experience and expertise. As the GI clinic ramps up, you are likely to save the lives of many more PN-dependent kids like M. in the years to come. It is our plea and hope that in the future, when you are caring for a patient that requires long-term vascular access through a central line, you will change your post-op protocol such that the child has a post-op appointment within six weeks where

the suture can be removed before the child grows skin and breast tissue over it or before it becomes so aggravating to the skin that granulation tissue takes over. This has caused M. to miss school, miss social events, miss horse shows and practice; it has caused her a significant amount of pain and added anxiety to her already extremely difficult health situation. She has had to be placed under anesthesia twice, which is terrible for her GI motility, and has cost our insurance thousands of dollars. As her parents, we have missed numerous days of productivity at our jobs, costing us financially. More so, it has cost us countless sleepless nights and parental guilt for not advocating for her as much as we should have or could have. Thank you for the care you have provided to our child and our family over the past fifteen years. Most sincerely, M.’s Parents v

Dear Friend of Oley, I often introduce myself as a complex medical mom to boy/girl twins, an invisible illness advocate, and a consumer marketing professional. But the title that has brought me the most pride, joy and sorrow is that of a nutrition support parent to my daughter, Ansley. Ansley and I found a connection within the Oley community when she had her first g-tube placed in 2005 to support her elemental formula therapy and again ten years later with her first central line placement for IV nutrition (TPN). As is the case with many others, TPN was supposed to be a temporary need for only six weeks. When she unexpectedly passed away in May 2020, she was approaching her fifth TPN anniversary.

Alaina & Ansley McCormick

I joined the Oley Foundation’s leadership team in October 2023 to support and advocate for the consumers, caregivers, family members, and all who “get” the struggle of living with home tube feeding and IV nutrition therapies. Our community and health are ever-changing. One way Ansley continued to advocate for herself despite constant change was through the resources found and the connections made to others like her while attending the annual Oley conference. Maintaining her legacy and dedication to others is a large part of why I decided to come work here. This fall, we embarked on our Annual Campaign so that the Oley Foundation can continue its mission to enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community, and innovation.

Above and below: Ansley

Thank you to all who have already donated. If you haven’t yet, please make your gift on our online donation form at oley.org/donations or by sending a check to us at the address listed on page 2. With your support, we can impact our community in a lasting way. Best wishes, Alaina McCormick Director of Development and Communication VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 17

Butterfly Pig Emerging Innovator Partnership One of the priorities outlined in our 2023–2025 Strategic Initiatives is to support the patient-centered evolution of nutrition therapy to improve care and enable patients to live their best life possible. Toward that goal, in 2023 we launched the Emerging Innovator partnership level. To learn more about the Emerging Innovator partnership, visit oley.org/ IndustryLandingPage. Meet our newest Emerging Innovator partner, the Butterfly Pig! The Butterfly Pig is a nurse-owned company that specializes in making medically inclusive toys. These miniature replicas of medical equipment are used for play therapy in the hospital and at home, to bring representation to kids with medical needs and help them process their unique experiences through play. Visit thebutterflypig.com. v

Thank You Corporate Partners! Please join Oley in thanking the companies that provide unrestricted grants to support the foundation year-round. Learn about our most recent corporate contributors in their own words below. For a complete list of corporate partners, go to oley.org/ PartnerShowcase.

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

VectivBio VectivBio is a global biotechnology company focused on the discovery and development of innovative treatments for severe rare conditions with high unmet need, including short bowel syndrome for patients dependent on parenteral support (IV nutrition and/or IV hydration). VectivBio is part of Ironwood Pharmaceuticals Inc., a leading global gastrointestinal (GI) healthcare company. To learn more, visit VectivBio.com.

B. Braun Medical Inc. B. Braun Medical Inc., a leader in infusion therapy, pain management and automated compounding, develops, manufactures and markets innovative medical products and services to the healthcare industry. The company is committed to eliminating preventable treatment errors and enhancing patient, clinician and environmental safety. To learn more, visit bbraunusa.com. 18 LIFELINELETTER

PATRON LEVEL

*Patron level not available for new partnerships

Notable Individual Contributions Among the contributions we receive, there are always several dedicated to those who have inspired the donor. We share this list of honorees below. We are grateful for the following gifts, received from August 16 to November 17, 2023. Memorials: In memory of Earl (“Buddy”) Bond; Jeff Dutton; Jerry Lynch; Peter Michalski; Clarence (“Oley”) Oldenburg; Jimmy Don Patton; Paula Southwick; Bob Sweet; Stephen Swensen; Elizabeth Tucker; John Tucker

Tributes: In honor of Kerry Jackson Joice; Aidan Koncius; Eddie, Rachael and Sue Miller; Jeff Nemeth Fundraisers: Facebook fundraiser campaigns for the birthdays of Michael S. Smithers and Sherry Nations, and Tiffany Dodd’s fundraiser at California Pizza. Thank you for all gifts and the kind comments we receive throughout the year. Your support overwhelms us and continues to be a source of inspiration. VOLUME 44, NO.4 | WINTER 2023/2024 ISSUE 19

2024 Oley Calendar

Please check oley.org or other appropriate websites for the most up-to-date information on the events listed below.

Ongoing: Applications being accepted for Oley Tim Weaver Camp Scholarship. February 5–9, 2024: Feeding Tube Awareness Week February 29, 2024: Rare Disease Day March 2, 2024: Oley symposium at ASPEN, Tampa, FL March 2–5, 2024: Oley exhibiting at ASPEN Nutrition Science and Practice Conference, Tampa, FL March 3–4, 2024: Digestive Disease National Coalition Spring Public Policy Forum, Washington, DC March 18, 2024: Oley award nominations due March 23—27, 2024: Oley exhibiting at National Home Infusion Association conference, Austin, TX June 29–July 2, 2024: Oley 2024 Connected, Tempe, AZ For more information, email info@oley.org or call (518) 262-5079.

SAVE the DATE

The Oley Foundation’s 38th Annual Consumer Conference

Connected

June 29, 2024 | Tempe, AZ

June 29 - July 2, 2024 We hope to see you there! Watch for details on oley.org and our social media pages! 20 LIFELINELETTER