Sleep plays an important role in regulating mood and supporting brain activity. New research and resources are available to help those on home parenteral nutrition (HPN) minimize sleep disturbances.
09 Oley 2024: Connected
Enjoy photos, attendee highlights, and more from the Oley 2024 annual conference.
Meet Lauren, Jessica, Eoin and Betty, winners of the four annual Oley awards, plus Linda, winner of the Joan Bishop Lifetime Achievement Award—all announced at Oley 2024.
Executive Director: Beth Gore, PhD
Editor, LifelineLetter; Director of Advocacy: Lisa Crosby Metzger
Director of Development & Communications: Alaina McCormick
Director of Corporate Engagement: Tracey Giambertone, MS, RDN, LDN, CNSC
Human Relations Manager: Maria Castrodad
Manager of Education & Innovation: Maisy Cyr, MSW
Manager of National Advocacy: Andrea Taylor, RD, CNSC
Operations Manager: Cathy Harrington
Youth Program Coordinator: Jade Lusk Science & Medicine Advisor: Manpreet Mundi, MD, FASPEN
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
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.
LifelineLetter
Fall 2024 • Volume 45, No. 3
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
Oley Voices
Andrea Taylor, RD, CNSC | Manager of National Advocacy
Throughout my career as a dietitian, I have witnessed many of the challenges nutrition support patients face. I have listened to their daily struggles as they fight to be heard, believed and supported, but I could only do so much in my former role. That’s why I sought to work for the Oley Foundation—to amplify their voices and make a real difference. My deep adoration for this community fuels my passion and energizes me in my daily work.
When they think of “advocacy,” many people picture someone meeting with legislators at the Capitol, lobbying for a certain bill to be passed. That form of advocacy is crucial and can be highly effective, although it often takes time to bring about change through legislation, as it is a gradual process. But there are many other forms of advocacy. In its simplest form, advocacy means speaking up for those who may not have a voice and ensuring their needs are heard and met.
In addition to offering patient-centric education, leading awareness campaigns such as HPN Awareness Week and Feeding Tube Awareness Week, offering monthly opportunities for virtual connection and support, and responding to daily inquiries from members, your Oley team has been actively advocating behind the scenes on issues that are important to you. Here are some recent examples:
• Submitted a letter to Colorado Medicaid supporting the expansion of GLP-2 pre-authorization requirements in line with research findings.
• Presented at the Mito Town Hall to raise awareness about the Oley Foundation.
• Submitted a letter in support of Patient Intestinal Failure ECHO (PIF-ECHO).
• Submitted a letter in support of the research project “Defining the Natural History of Pediatric Intestinal Failure.”
• Presented during the FDA Compounding Listening Session on the topic of drug shortages (see more about this on page 5).
• Signed a letter in support of the Creating Hope Reauthorization Act.
• Submitted public comments on the proposed China tariff affecting medical supplies, including enteral syringes.
In addition, I’m thrilled to have represented Oley at COGI’s Equity in GI conference in Atlanta, Georgia, in late July. After a deeply inspiring experience last year, I was excited to return, to learn and explore how Oley can further promote health equity. In August, I’ll present “Building Stronger Connections: Patients, Clinicians, and the Oley Foundation” at the Virtual PN Summit. By raising awareness among nutrition support clinicians, we aim to reach more patients earlier in their journey. You can make a difference, too! Share your story to educate others and raise awareness. Write to legislators about issues affecting those on nutrition support, participate in research, and build strong relationships with your healthcare team to involve them in advocacy.
Reflecting on our recent advocacy work highlights the importance of our collective voice in bringing about change. But the journey is far from over. Your support and involvement are crucial as we face new challenges and opportunities. Thank you for being an essential part of our advocacy efforts.
Tell us what you are doing!
ON THE COVER : Left to right: Oley members Chalice, Brittany, and Roy reuniting at Oley 2024. These three friends, who represent consumers, industry, and the Oley Board of Trustees, embody the Oley 2024 spirit, as stakeholders from the nutrition support community came together as one.
We’d love to hear what advocacy efforts you are involved in or how you are being a voice to the community. Email us at info@oley.org.
Oley Staff Expands
Maria Castrodad, Human Relations Manager
We are excited to introduce our newest staff member, Maria Castrodad. Maria joined the Oley team as Human Relations Manager this summer, just before the annual conference. She was quickly immersed!
With a strong background in human resources, Maria brings to Oley a wealth of experience in efficiency and organizational skills. She is passionate about fostering team collaboration, and looks forward to working closely with other staff members to serve and support this community. She is dedicated to making a positive difference in both her professional and personal life. Outside of work, Maria cherishes time with family.
Good Reads Featuring Oley Members
Malnutrition & Older Adults
Oley members Mary Kunz and Katie Marschilok share what they have experienced and seen others experience related to malnutrition in the article, “Often Alone, Not Eating: Older Adults Struggle with Malnutrition,” by Jeanette Beebe, published online July 12, 2024. The article explores the many issues that may lead to malnutrition, particularly in older adults. Read the article at nextavenue.org/older-adultsstruggle-with-malnutrition.
Access Issues
Oley Executive Director Beth Gore and long-time member and Ambassador Bettemarie Bond recently contributed to the article “ASPEN survey of parenteral nutrition access issues: How the system fails the patient,” first published July 18, 2024, in the online version of Nutrition in Clinical Practice.
For this research, home IV nutrition consumers responded to a survey with questions designed to “determine the extent and severity of PN access issues with components, devices, healthcare professionals, and transfers of care.” There were also questions regarding reimbursement, insurance coverage, and healthcare costs. Burdens measured included “impact on disease symptoms and medical outcomes as well as the types and frequency of medical or system errors experienced, adverse events, or resultant nutrition problems.” The conclusion states, “This patient survey provides evidence that access issues can result in the ‘failure of the PN system’ to assure care is consistently safe and effective.” To view the complete article, visit doi.org/10.1002/ ncp.11187. ■
Learn How to Spot and Prevent Malnutrition
Use the code “MAW-Oley” for complimentary registration to Malnutrition Awareness Week webinars.
Visit the consumer section of the Malnutrition Solution Center for resources to help patients and caregivers identify and understand malnutrition and for tips on speaking with healthcare providers. nutritioncare.org/Oley-MAW
SEPTEMBER 16-20, 2024
FDA & Drug Shortages
Andrea Taylor, RD, CNSC | Manager of National Advocacy
On May 17, I had the privilege of addressing the US Food and Drug Administration (FDA) and other organizations on behalf of Oley members. In my opening statement, I expressed gratitude for the opportunity to speak, emphasizing that patients’ voices are often excluded when decisions are made by clinicians, industry, and government agencies.
I went on to share images from our 2023 annual conference in St. Louis, Missouri, showcasing real patients actively living their lives rather than confined to hospital beds. I then dove in with a critical issue for our members: shortages. Few outside the nutrition support community understand the complexities of parenteral nutrition (PN) or the severe impact of shortages. PN consists of at least twenty separate sterile injectable components. Even a single shortage can have significant consequences, especially given the limited or nonexistent alternative products. For instance, during a recent shortage of IV multivitamins, many patients were advised to switch to oral supplements, which can be inadequate if
awareness and drive meaningful change. Oley remains committed to amplifying patient voices in healthcare decision-making, ensuring that the challenges and needs of those requiring nutrition support are not only understood, but also prioritized in policy discussions and initiatives. ■
Even a single shortage can have significant consequences, especially given the limited or nonexistent alternative products.
ENTERAL FEEDING PUMP
Getting Better Sleep When Using Parenteral Nutrition at Home
Hassan S. Dashti, PhD, RD, and Adline Rahmoune, BS
Importance of sleep
Getting enough hours of restful sleep is necessary for a person’s physical and mental health. It is well documented that sleep plays an important role in regulating mood and supporting brain activity. Studies have linked short sleep duration with metabolic disorders, including diabetes and heart disease, and psychiatric disorders such as depression. Unfortunately, sleep disturbance is common among consumers of at-home parenteral nutrition (HPN). This is especially true when consumers run their infusions at night (Dashti, Godbole, et al. 2022).
Our studies, which were presented at the 2022 and 2023 Oley annual conferences and published in the Journal of Parenteral and Enteral Nutrition, indicate that most HPN consumers experience sleep disruption and that HPN consumers often do not meet recommendations for sleep duration and quality (Dashti, Godbole, et al. 2022). Those goals, based on National Sleep Foundation recommendations, include getting seven to nine hours of sleep per day and spending no more than twenty minutes awake after initially falling asleep.
HPN consumers who run their infusions at night coinciding with their sleep are at the highest risk of not getting adequate sleep (Dashti, Rhyner, et al. 2023). According to our research, the most common factors contributing to sleep disruption are waking up to use the bathroom (nocturnal polyuria), noisy pump alarms, night sweats, and anxiety. However, running HPN at night is standard (almost 85 percent of HPN consumers do it) because it is convenient and does not limit activity
during the daytime (Dashti, Rhyner, et al. 2023). Daytime mobility comes at the cost of restful sleep. Although sleep problems with PN are well recognized, consumers almost never receive guidance on how best to sleep when discharged on HPN (Barrera, Poindexter, et al. 2023). In addition, existing healthy sleep recommendations from professional organizations, such as the Centers for Disease Control (CDC) or the Sleep Research Society, are generally not applicable to HPN consumers as they do not address medical equipment and presume that all people eat by mouth. For that reason, in 2023, the American Academy of Sleep Medicine provided funding to support the sleep of HPN consumers by generating the first set of sleep resources tailored for HPN adult consumers (Rahmoune, Spadola, et al. 2024).
The Community Sleep Health Study
Led by Dr. Hassan S. Dashti at the Massachusetts General Hospital, Harvard Medical School in Boston, Massachusetts, the HPN community sleep health study—the results of which were recently published (Rahmoune, Spadola, et al. 2024)—shared the first set of healthy sleep practices for HPN consumers. The community-based participatory research study included a multidisciplinary research team of sleep and nutrition scientists and clinicians, and HPN consumers who shared their lived experience with sleep while consuming HPN. The project started in February 2023 and took one year to complete.
There were multiple steps involved in creating the sleep resources. The core research team, which was composed of two HPN consumers and five scientists, first compiled an extensive list of existing sleep recommendations and carefully evaluated whether each recommendation was relevant to HPN consumers. Then, online focus groups were carried out with nine HPN consumers and eleven clinicians caring for HPN consumers to learn more about sleep firsthand from the community. The literature search and the focus group findings led to the first draft of recommendations. This draft was reviewed by ten additional members of the community to determine whether each item was useful and whether it improved sleep knowledge.
Continued on next page >
This information was used to refine the list of recommendations and to produce the final version of the healthy sleep practices handout for HPN consumers in English and Spanish.
A more in-depth description of the study can be found in the published study, available for free, on the website of the journal Current Developments in Nutrition (Rahmoune, Spadola, et al. 2024).
Sleep resources for HPN consumers
Stress and Anxiety
Frequent Naps and Physical Inactivity
Physical and Psychiatric Comorbidity
Smoking and Alcohol Use
The final HPN sleep resources consist of thirty-six recommendations divided across four sections: getting ready for bed, preparing the bedroom for sleep, daytime behaviors, and overall strategies for better sleep, followed by a sleep diary. The recommendations partly include general guidance on how best to sleep based on known sleep hygiene guidelines. These, for example, include recommending seven to nine hours of sleep per day, maintaining a consistent sleep schedule by going to bed around the same time each night, following a relaxing bedtime routine, and avoiding electronic devices before bed.
Oral Diet and Fluid Intake
Potential Contributors to Poor Sleep with Home Parenteral Nutrition
Medication
Malnutrition and Nutritional Deficiency
Parenteral Nutrition
The handouts also address unique sleep challenges often faced by HPN consumers, such as frequent urination at night, noise and light from infusion pumps, infusion schedules, and medication interference. These include recommendations related to adopting a consistent HPN infusion schedule whenever possible, slower HPN infusion rates (Chichester, Rahmoune, Dashti, 2024), emptying the bladder or ostomy bag before bed, having earlier mealtimes for consumers who eat by mouth, and creating a clutter-free bedroom environment to make trips to the bathroom easier and safer.
For some consumers, daytime infusions or fluids can limit sleep disruption. Have you considered running your HPN during the daytime? In our new study, published in the American Journal of Clinical Nutrition, we demonstrated that running PN at home during the daytime is safe and helps consumers have better quality of sleep because they wake up less frequently (Dashti, Leong, et al. 2023). We recently shared the full study findings with HPN
Infusion Pumps and Other Medical Equipment
IV Hydration and Ostomy Output
consumers in a video on YouTube (visit youtube.com/ watch?v=Ia7DJjb1igo).
Lastly, a sleep diary is also included in the handout so consumers can track their sleep and infusions, and work with their healthcare team to address sleep concerns. Remember, always discuss your interest in potentially adjusting your HPN regimen with your medical team first. We hope that these handouts help new HPN consumers get better sleep. ■
Hassan S. Dashti, PhD, RD, and Adline Rahmoune, BS, are affiliated with the Department of Anesthesia, Critical Care and Pain Medicine, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts.
More tips on the next page!
The full resource is available in English and Spanish, and can be downloaded for free from the Oley Foundation website (click on the Resource tab and select “Sleep on TPN”).
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Figure 1. Potential factors contributing to poor sleep in adults dependent on home parenteral nutrition (created with BioRender.com). Reprinted with permission from Dashti HS. Sleep and home parenteral nutrition in adults: a narrative review. Nutr Clin Pract. 2024; 1-13. doi:10.1002/ncp.11181
Tips from “Getting Better Sleep When Using TPN at Home” (“Dormir mejor al usar NPT en casa”), available in Spanish and English at oley.org.
References
Barrera R, Poindexter K, Tucker C, Winkler MF, Dashti HS. Amplifying the lived experiences of parenteral nutrition consumers through the thematic analysis of social media posts. Nutr Clin Pract. E-pub December 2023. doi:10.1002/ncp.11097
Chichester S, Rahmoune A, Dashti HS. Home parenteral nutrition, sleep patterns, and depressive symptoms: Secondary analysis of cross-sectional data. J Parenter Enteral Nutr. April 2024. doi:10.1002/ jpen.2631
Dashti HS, Cade BE, Stutaite G, Saxena R, Redline S, Karlson EW. Sleep health, diseases, and pain syndromes: findings from an electronic health record biobank. Sleep. 2021;44(3). doi:10.1093/sleep/zsaa189
Dashti HS, Godbole M, Chen A, et al. Sleep patterns of patients receiving home parenteral nutrition: A home-based observational study. J Parenter Enteral Nutr. 2022;46(7):1699-1708. doi: 10.1002/jpen.2346
Dashti HS, Leong A, Mogensen KM, et al. Glycemic and sleep effects of daytime compared with those of overnight infusions of home parenteral nutrition in adults with short bowel syndrome: A quasi-experimental pilot trial. Am J Clin Nutr. Epub December 2023. doi:10.1016/j. ajcnut.2023.11.016
Dashti HS, Rhyner JJ, Mogensen KM, et al. Infusion timing and sleep habits of adults receiving home parenteral and enteral nutrition: A patientoriented survey study. J Parenter Enteral Nutr. 2023;47(1):130-139. doi: 10.1002/jpen.2446
Rahmoune A, Spadola C, Johnson B, et al. Healthy sleep practices for consumers of home total parenteral nutrition: a mixed-methods community-based participatory study. Current Developments in Nutrition. April 2024:102155. doi: 10.1016/j.cdnut.2024.102155
HPN Awareness Week: October 13–19, 2024
For many Oley members, home parenteral nutrition (HPN) is part of life. But many people don’t know what parenteral nutrition is, why it is used long term, how it helps, and what challenges and struggles it brings.
HPN Awareness Week is meant to bring some light to these things. It is a chance for HPN consumers and caregivers to share their stories; to build bridges to HPN consumers, caregivers and clinicians who are not yet connected to the community; to provide hope to others; and an opportunity to talk about the challenges.
Raising awareness that HPN plays a critical role in many people’s lives can form an important base for
future advocacy efforts. Knowledge, understanding and compassion can lead to changes in attitudes, policies and practices that affect this community. Every voice matters, at every level.
(Read more about Oley advocacy efforts on pages 3 and 5.)
Watch oley.org and our social media pages to see how you can participate!
Linda Gravenstein Awarded Joan Bishop Lifetime Achievement Award Posthumously
The Joan Bishop Lifetime Achievement Award is given by the Oley Foundation to a person who has dedicated their time, talent and passion to advancing the field of home nutrition support therapy across the decades. This is the only award decided by the Oley Board of Trustees and is 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. This award is named in honor of Joan Bishop, Oley Foundation Executive Director Emeritus, for her nearly forty years of service to Oley. To many, she has been “the help along the way.”
Linda Gravenstein served as an Oley Regional Coordinator (the precursor to the Oley Ambassador program) for many years. As a Regional Coordinator, she reached out and offered support to patients who were new to tube feeding and IV nutrition therapy. She later worked at Coram and Nutrishare as a patient advocate. Linda helped people navigate the system, gave tips on how to travel, and connected people to various resources. She was known for being a good listener.
We are sorry to share that Linda passed away unexpectedly on December 31, 2023. She was nominated for this award before her untimely passing. We were fortunate that her husband, Ray, could attend the conference and accept the award on Linda’s behalf. Linda attended many Oley conferences with Ray and their daughter, Megan; Linda was there as often as she was able to be. She also frequently attended the Digestive Disease National Coalition (DDNC) Spring
Public Policy Forum, where she brought the voice of home nutrition support consumers and caregivers to elected officials on Capitol Hill.
In 2016, Linda was given ASPEN’s Lyn Howard Nutrition Support Consumer Advocacy Award, named in honor of Oley Foundation’s cofounder, Lyn Howard. In receiving the award, Linda said, “I would like to thank Dr. Lyn Howard and the Oley Foundation for giving us and so many a purposeful life. I would also like to thank my daughter Megan for being my light and her fierce independence that allows me to share with others what we have learned in our journey.”
As noted in a nomination, “Linda will be remembered as a national advocate as well as a strong advocate to her most important consumer, her own daughter Megan. Her husband, Ray, was always by her side. They made a great dynamic duo.” ■
Linda Gravenstein and Joy McVey visiting various legislative offices in Washington, DC.
Oley Board of Trustees President Kelly Tappenden, PhD, RD, FASPEN, and Ray Gravenstein, receiving the award in honor of his late wife, Linda.
Experience Expo
Tracey Giambertone, MS, RDN, LDN, CSC | Director of Corporate Engagement
This year, our conference exhibitors truly brought the spirit of connection to life with engaging games and activities. Our exhibitor partners not only love to have fun but also took great joy in crafting memorable experiences for all attendees. With thirty-four diverse booths, there was something for everyone to enjoy. Visitors got creative with fun crafts like decorating their own backpacks or cowboy hats. Booths featured patient advocates, consumer inventors, and unique photo opportunities, including snaps with adorable mascots or in front of a stunning Bavarian backdrop. We are grateful to our exhibitors for their creativity and enthusiasm, making the 2024 Oley conference Experience Expo an unforgettable experience. We can’t wait to see what next year brings! ■
Oley 2024 Conference • Tempe, Arizona
Oley 2024: Oley Recognizes Award Winners
The Oley Awards program recognizes home IV nutrition (parenteral) and tube feeding (enteral) consumers and caregivers who exhibit courage and perseverance in overcoming the adversities of illness and are generous in helping others. The stories clinicians, family members, peers, caregivers and patients relay in the nominations are truly inspiring. It is a difficult job to select just one winner for each award from the outstanding pool of nominees! We congratulate everyone who was nominated for an Oley award.
Please consider nominating someone who inspires YOU! There are so many worthy candidates! Nomination forms will be accepted January through March 2025. Visit oley.org/nominations or call (518) 262-5079.
We hope you enjoy reading about this year’s winners. Awards were presented at the Oley 2024 conference.
Lauren Hood HPN Hero Award
Sponsored by Nutrishare, this award recognizes a consumer on home parenteral nutrition (HPN) or caregiver, 18 years old or older, who demonstrates courage, perseverance, and a positive attitude in dealing with their illness and living a more fulfilling life on HPN.
When notified she had won the award, Lauren wrote: I have been HPN dependent since I was two days old. I am currently thirty years old. Being on HPN has allowed me to have and continue to live my life to the fullest. I have been able to travel, play sports, go to college, become a nurse, marry my best friend, and welcome a sweet boy into this world. When my sweet boy was born, we were surprised that he would also need HPN. Today I am thankful for new medical advancements and the research going into short bowel syndrome.
Winning this award is truly an honor. I am grateful for the community that has formed and how community members support each other. Being on HPN and having a son on it has brought an entirely new perspective into my life. I enjoy helping others any way I can and helping others see the positive to HPN. It’s not always easy, but being able to live is a miracle.
Sponsored by Nestlé Health Science, this award recognizes a consumer on home enteral nutrition (HEN) or caregiver, 18 years old or older, who demonstrates courage, perseverance, and a positive attitude in dealing with their illness and living a more fulfilling life on HEN.
When notified she had won the award, Jessica wrote: I have had a gastrostomy and jejunostomy tube due to gastroparesis and intestinal dysmotility. I was misdiagnosed with cyclic vomiting syndrome for years before being properly diagnosed with gastroparesis, due to a lack of testing and a disregard for my symptoms as a young person. It was knowledge of the chronic illness community that gave me the language to advocate for proper testing, and it saved my life. I am proud to accept the HEN Hero Award. It feels like it’s a beautiful representation of disability pride and visibility, and I am proud to be a part of it.
I am a PK-6 educator on long-term disability who has turned to social media to share information and activism about disability and chronic illness, with a focus on digestive disability and medical devices. I strive to make medical language accessible for fellow chronically ill people, as well as highlight the importance of intersectionality with all marginalized groups.
Congratulations to our nominees: Matthew Cech, Bethany Dawson, Cory Morris
Eoin McCausland Rising Star Award
Sponsored by Abbott, this award recognizes a consumer on home IV nutrition or tube feeding, 17 years old or younger, who shows a positive attitude in adapting to life on therapy which encourages and inspires others.
Eoin’s mom writes,
At only a few days old, Eoin showed signs of needing nutritional support. It took nine weeks in the NICU, a plethora of tests over the next year and a half, and multiple specialties to end up with a diagnosis of chronic idiopathic intestinal pseudo-obstruction. Eoin had surgery to place a G-tube and worked at intensive feeding therapy. He dealt with massive distension, but always strived to participate in what his friends did. Through his elementary years, he played soccer, baseball, the viola, and was a Cub Scout.
Unfortunately, Eoin has lost his ability to have oral intake or much enteral nutrition (tube feeding) at all in the past few years and is completely dependent on parenteral (IV) nutrition at this point. He has always been part of the decision-making team when it comes to his care and is so inquisitive, making sure he understands what is happening and why. His mental health needed to become a priority in the past few years, and he advocated for and voiced his need to focus on that.
In high school, Eoin has involved himself in several clubs and the school drama, with a lead role in two productions. He continues with his goal of becoming an Eagle Scout. Eoin participates in all of these activities while on or off of parenteral nutrition. He readily answers questions and explains his medical situation to others. Last year, his first time at an Oley conference, he was in his element, meeting others his age, and connecting over shared experiences. This award means so much to Eoin because he continually strives to be a positive leader and to share his experience with others.
Congratulations to our nominees: Olivia Cassera, Sarah Hernandez, Gabriel Lopez, Zoe Miranda
Elizabeth Bond Caregiver Extraordinaire
Sponsored by Ironwood Pharmaceuticals, this award recognizes a caregiver/supporter to a consumer on home IV nutrition or tube feeding, of any age, who demonstrates patience, compassion, and dependability, and provides effective care in helping a consumer live more fully on home nutrition support.
Betty’s daughter, Bettemarie, writes, “We learned about Oley, and two weeks later we drove several hours from Levittown, Pennsylvania, to Saratoga Springs, New York, for a picnic! Little did we know how our lives would be changed for the better that day.” Since then, Bettemarie continues, her mom “has volunteered in thousands of ways to give other families some of that magical support we received that day. She selflessly helps families locally and across the country.”
Betty has served the Oley community as an Oley Regional Coordinator (forerunner to the Oley Ambassador program); on Oley’s Board of Trustees; as a nurse at the Paul Newman Double H Ranch so kids with PN could attend; and so much more. Bettemarie writes, “She has always figured out a way to work in what needed to be done for Oley, making Oley’s mission of support, education, outreach, and advocacy a priority. She has seen the positive impact Oley has had and has been a supportive ear and guide for others going through experiences similar to ours.”
At the same time, Betty has been a “caregiver extraordinaire” within her own family as well. Bettemarie says, “My mom’s support throughout my life has enabled me to rise to heights doctors told me initially were impossible. I’ve been able to do all I have done because of her love, devotion, generous heart, compassionate way, and selfless giving nature… My TPN is to me like wings are to an eagle; it allows me to fly and to be me! And my mom is the wind beneath my backpack wings! She is also the breeze that has helped support Oley’s growth during the past thirty-three years in amazing ways.”
Betty writes, “I’m honored more than words can express to receive this award. It touches my heart deeply because Oley has been a second family to me since that first picnic we attended back in the early 1990s. Thank you, Oley staff and friends, for providing love, support, education, and strength over the years, which helped me to become the best caregiver I could be. I’m blessed to have been married to a wonderful husband for over fifty-five years. I’m a loving mother to three children and two daughters-in-laws, and a grandmom to four! I like to refer to myself as an Energy Saver for my daughter who is on home parenteral nutrition.”
Oley 2024 recordings are ready for viewing! There was something for everyone, including general sessions by Dr. Erin Nance and Nick Jackson, NRP, on self-advocacy, Jessica McCaig, LICSW, PMH-C, about quality-of-life research, and a panel on life stages. Explore all recorded sessions at oley.org/2024ConferencePresentations.
A big thank you to corporate partners who planned and sponsored the presentations summarized below. We are grateful for their support. Sponsored presentations offered as a main session, as indicated with an asterisk, were recorded. Breakout sessions were not recorded to provide confidential, interactive participation. For Oley 25, we are exploring funding to record all general, sponsored and breakout sessions.
Ironwood Pharmaceuticals
*How to Build a Dream Team
Finding knowledgeable care and support can be difficult when living with a severe intestinal condition like short bowel syndrome (SBS). A panel of SBS patients and clinical experts came together to discuss experiences and strategies.
Top tips include: (1) Be upfront with your care team about your goals and what’s important for your quality of life—recognize these may evolve; (2) If you’re struggling to find the right support, turn to your network, including peer support groups; (3) “Expert care” also means a willingness to listen to you and consult with others; (4) Your community healthcare team can connect to a hub of specialists via LIFT ECHO (liftecho.org).
To learn more about patient group services for SBS, download your copy of the SBS Community Guide at oley.org.
Takeda
Nestlé Health Science
*Blending at Home: Individualized Tube Feeding Recipes to Meet Your Needs
Robin Cook, MS, RD, LDN; Chef Anna Kim
This session highlighted prepared and commercial blenderized tube feedings (BTF), including a historical overview, evolving research and evidence, and the benefits of BTF. Development of the innovative Blenderized Tube Feeding Recipe Builder was outlined, and participants learned how to partner with their healthcare providers on creating BTF recipes with the tool to meet their individualized nutrition needs. The session featured a live demonstration of the online tube feeding recipe builder program as well as a live recipe creation! Create your free account now to access the tool by visiting compleat.com/blend-at-home.
The Blenderized Tube Feeding Recipe Builder is powered by the Blenderized Diet Recipe Calculator. The Blenderized Diet Recipe Calculator was created by Robin Cook, MS, RD, LDN, and is reproduced with permission under a license from Children’s Hospital of Philadelphia®. No endorsement by Children's Hospital of Philadelphia® or by Robin Cook, MS, RD, LDN, of any Nestlé Health Science brand or product is implied or intended. USE UNDER MEDICAL SUPERVISION.
*Getting to Know Short Bowel Syndrome (SBS) and a Possible Treatment Option
Ann Michalek, MD; Misa B.
In this presentation, Dr. Michalek shared information about short bowel syndrome (SBS), including: risks associated with malabsorption; types of parenteral support; and the role of glucagon-like peptide-2 (GLP2), a hormone produced in the intestine that helps the
body absorb nutrients and fluids. After reviewing SBS and its treatment goals, she presented information about a prescription treatment option. Misa, an adult with SBS, shared her experiences with SBS and its treatment. An engaging Q&A closed out the session.
Takeda
Transitions of Care: Discussing a Roadmap of Milestones for Short Bowel Syndrome (SBS)
Sivan
Kinberg, MD, MS, MA; Swapna Kakani, MPH; Marie L. Neumann, MA
This panel discussion, which included perspectives from a pediatric gastroenterologist, a patient, and a caregiver, covered key milestones that young people living with short bowel syndrome (SBS) may experience from diagnosis to adulthood. The speakers underscored the pivotal role of transition planning in the clinical care of adolescents and young adults with short bowel syndrome. Visit shortbowelsyndrome.com/Content/pdf/sbs-transitionsof-care-plan.pdf to download a free-of-charge guide from Takeda that covers this important topic in more detail.
Zealand
Importance of Including Patient Exit Interviews in Clinical Trials: Experience with Glepaglutide in EASE SBS-1 Trial
David Mercer, MD, PhD, FRSCS, FACS
Quality of life and additional patient experiences are important measurements to consider in clinical trials. Neglecting to assess individual response eliminates key information when evaluating the overall impact and outcomes of the study treatment. This presentation increased awareness of quality of life outcomes in clinical trials, described the role of exit interviews, provided information from the EASE-1 patient exit interviews, and encouraged trial participation to help move forward this essential trial measurement.
Cardinal Health
Fueling Your Engine with Enteral Nutrition: Making Wise Choices Around Hydration and Feeding
Beth Lyman, MSN, RN, FASPEN, FAAN; and Carol IretonJones, PhD, RDN, LD, CNSC, FAND, FASPEN
Attendees for this session had the opportunity to hear from experienced clinicians, one a nurse and the other a dietitian, on how enterally fed patients can reach and maintain a high quality of life by monitoring their fluid and nutritional intake and participating in an individualized nutrition care plan.
Cardinal Health understands that patients, caregivers, and healthcare providers need evidence-based knowledge and confidence to optimize their treatment and safety while receiving enteral nutrition. Specific recommendations for both pediatric and adult home enteral nutrition patients around hydration and enteral formulas were provided to help patients and families understand the impact of dehydration. The importance of adequate fluid intake in various aspects of daily life was reviewed with emphasis on optimizing both patient and family quality of life.
Every home enteral nutrition patient’s hydration and nutrition needs must be part of an individualized nutrition care plan that is closely monitored by a healthcare provider over time.
Check out more photos from Oley 2024 at albums.memento.com/Oley2024. Please upload and share your photos, too! We’d love to see the special moments you captured.
Thank You to All Who Contributed to Oley 2024
Our heartfelt thanks to the many who contributed to making the Oley 2024 conference a success. To volunteers who helped at the registration desk, in Kidz Klub, and all around; to the faculty who prepared and presented information without compensation; to the exhibitors who made the Experience Expo such a fun place to be; to the corporate and individual sponsors who helped make the meeting possible; and to all the attendees who opened their hearts and arms to each other—a huge thank you.
Thank you for your kind and generous donation to the Oley conference travel grants. The number one shared reason many cannot attend our in-person conference is due to cost. Your contribution allowed families to travel and attend the 2024 Oley conference. Your gift provided consumers and their loved ones with an opportunity to connect with others on a similar journey. Your kindness will live on in the many lives touched.
Contributors (sponsorships, speaker support, donations, etc. that help offset conference costs)
Abbott; Ann Anderson; Julie Andolina; Atlanta Umpires; Avanos; Frona Brown, in memory of Ester Ann Brown Adler; Butterfly Pig; Cardinal Health; the Cleberg family; Janice Cooper; Coram CVS/Specialty Infusion Servies; Jose Escamilla; the Hoopes family; Cherie Humphrey; Ironwood Pharmaceuticals; Kate Farms; L & B Worldwide; Nancy Lesslie; MagicWig Productions; Michelle Marti; Paul May; Jerry Mayer; Mighty Well; Moog; Kelley Napier; Amber Nelson; Nestlé Health Science; NorthSea Therapeutics; Nutrishare; Optum; Michelle Pfab; Real Food Blends; Resilience Medical; Takeda Pharmaceuticals; Annette Tappee; David Vermette; Meghan Winans; Marion Winkler; Lynn Wolfson; Zealand Pharma
Exhibitors (exhibit fees help offset conference costs)
Ajinomoto Cambrooke; Alcresta Therapeutics Inc.; American Society of Parenteral and Enteral Nutrition (ASPEN); Amerita Specialty Infusion Services; Avanos; B. Braun Medical Inc.; Baxter Pharmaceuticals; Cardinal Health; Coram CVS/ Specialty Infusion Services; Covalon Technologies Ltd.; Danumed Medizintechnik GmbH; FreeArm; Fresenius Kabi; GBUK Group Ltd.; Global Enteral Device Supplier Association (GEDSA); Kate Farms; LumaClean; Luminoah; Moog; Nebraska Medicine; Nestlè Health Science; Nutrishare; Option Care Health; Optum; Real Food Blends; Rockfield Medical Devices; Soleo Health; Takeda Pharmaceuticals; Transplant Unwrapped; TubiEssentials; United Ostomy Association of America, Inc. (UOAA); Vesco Medical
To the exhibitors who were unable to join at the last minute, we missed you: Ben Guard; Resilience Medical
Faculty (donate their time and expertise)
Dawn Adams, MD, MS, CNSC; Ruby Barrios; Bettemarie Bond; Erin Danzer; Mary Gallotto, RN, MSN, CPN; Joan Gordon, LCSW; Ruby Barrios; Emily Hoopes; Carol Ireton-Jones, PhD, RDN, CNSC; Nicholas Jackson, NRP; Bethany Johnson; Maria Karimbakas, RD, CNSC; Gaby Luna; Beth Lyman, MSN, RN; Jessica McCaig, LICSW, PMH-C; David Mercer, MD; Ann Michalek, MD; Erin Nance, MD; Kelley Napier, CELA; Kristy Poindexter; Cynthia Reddick, RD, CNSC; Ashley Roberge-Boire, MSW, LICSW; David Vermette; Marion Winkler, PhD, RD, LDN, CNSC
Volunteers (give their time and talents)
Hannah Anderle; Julie Andolina; Marilyn Atchue-Zuill; Becky Bacon; Kelly Baker; Sara Barboza; Brody Batesole; Gina, Hayden and Tanner Blair; Ashleigh Bond; Kaylee Campa; Kathryn, Joe and Charlie Cleberg; Rachael Connolly; Brittany Detrick; Tiffany Dodd; Ella Domel; Ansley and Avery Epp; Fran Freeman; Zoe Gore; Megan and Seth Halligan; Tonya Henry; Brian and Emily Hoopes; ShayLee Hunter; Nicholas Jackson; Caitlin Kibby; John and John Mahalchak; Jaden Maynard; Eoin and Gavin McCausland; Hayden McCormick; Ethan Miller; Maddie and Tammy Morris; Donna and Richard Noble; Aamani Parchuri; Summer Payne; Wendy Raissle; Javier Ramirez; Laney Reddick; Lauren Reimer; Vincent Rosche, III; Lee Runyon; David and Oliva Scali; Jayme Scali; Maria Schmidt; Art Taylor; Elise Vilrokx; Daura Veater; Hannah Welch
behind the scenes
Child's Play
Jade Lusk | Youth Program Coordinator
Coming in as a new Oley Foundation staff member, I was impressed even before the annual conference began. Through the busyness of planning and running a conference, Oley staff really try their best to accommodate everyone, down to the smallest details that some might overlook―things like advocating for attendees and their needs to hotel staff, making sure everything is wheelchair accessible, making maps friendly for those with impaired vision, and more. I truly applaud them.
My heart is overflowing with the love and kindness I saw at the annual conference from kids, parents, and other attendees. It was a pleasure to get to know the children in Kidz Klub, and each of you who stopped and said hi. Aside from my time with the kids, my favorite moments from the conference are the times I got to just freeze and connect. The elevator discussions were the best.
The first thing at the conference was the amazing welcome reception. I had fun creating the activity tables for this event. I enjoyed setting them up even more, because I had help from one of our Kidz Klub kids. He was so excited to help in any way he could. “Put me to work,” he said. The activities were a nice change of pace in a room filled with so many people. I heard many attendees say they needed something to do that was more on the calmer side, like paint by diamonds or making bracelets.
For those who didn't get a chance to witness the fun of Kidz Klub, let me share a bit about it. At its most basic, Kidz Klub is a safe place kids can go while parents attend sessions at the conference. It grew into an amazing experience for Oley’s youngest members. From the games, crafts, dancing, singing and more, we truly connected. The conversations that I witnessed
were powerful. Kids dug deep and asked themselves who they care about and how they can connect with them and new friends as well.
It can be hard for some families to take a trip to the zoo or other outside entertainment, especially in the hot summer. So we brought outside experiences to the kids . The Phoenix Zoo was first on my list as I was planning. They were well priced and when they came, they brought some amazing animals (like a kookaburra!), which really helped the kids and the teens open up. It was wonderful to see the smiles and amazement on their faces.
We also found a Lego group called Bricks 4 Kidz. They came on the first day, and that activity helped break the ice for kids who would be meeting new friends for the first time. After these activities, the kids helped teach the zookeepers and the Lego people a little about the Oley world. We gave them a gift bag that had more information inside it. The kids were so thankful to them, and our visitors definitely left feeling loved.
Now let me brag about these amazing kids. They blew me away with their kindness and hearts that were open for new friends. A few children even made wheelchair parking for our zoo session without being prompted. The
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connections that were made were out of this world. I hope they all enjoyed their time in Kidz Klub just as much as I did.
Parents, thanks for trusting us with your most valuable treasure, your children. I enjoyed being able to chat with many of you and hope to be able to find more time next year to do the same. Knowing that many of our Kidz Klub attendees have different medical needs, I loved learning from you and your children about new ways to help keep them safe.
I couldn't have created such a great Kidz Klub experience without the help from our amazing volunteers. They gave their time and hearts to Kidz Klub and made it a success. Thanks again. Oley is not one person, it is a village. I can't wait to see many of you at Oley’s 2025 conference, Primed and Ready to Grow. ■
FOR PATIENTS WHO REQUIRE TUBE FEEDING
TAKE FAT ABSORPTION TO THE NEXT LEVEL
RELiZORB is indicated for use in pediatric patients (ages 2 years and above) and adult patients to hydrolyze fats in enteral formula. RELiZORB is for use with enteral feeding only. RELiZORB should not be connected to an intravenous (IV) line, setup, or system. Medications should not be administered through the cartridge.
RELiZORB should only be used as directed by your physician. Please see Instructions for Use at RELiZORB.com
This summer, Cardinal Health announced that it will discontinue sale of the Kangaroo™ ePump and Kangaroo™ Joey enteral feeding pumps, as well as the associated feeding sets, citing global supply chain issues as part of the reason. While they are working to improve service levels of feeding sets, they anticipate problems with intermittent service and production costs to rise. In a letter to customers dated June 17, 2024, Cardinal Health notes that it will continue to service these pumps “until the contracted warranty end date or until the depletion of available spare parts inventory—whichever comes first.”
Cardinal is encouraging a transition to the Kangaroo OMNI Kangaroo™ enteral feeding pump, which was launched in September 2023.
Discontinuation Schedule
KangarooTM ePump and KangarooTM Joey Capital Equipment End of Sale Date September 30, 2024
End of Service Support Date Out of Warranty December 31, 2024
End of Service Support Date Within Warranty Through Warranty End Date
KangarooTM ePump Feeding Sets and Accessories Anticipated End of Supply Date June 30, 2025
KangarooTM Joey Feeding Sets and Accessories Anticipated End of Supply Date September 30, 2027
The full letter is available at oley.org/HEN_LandingPage. If this will affect you, please reach out to your home enteral nutrition supplier (DME or infusion/homecare company). They can contact Cardinal directly on your behalf. ■
Promoting PatientCentered Healthcare
We are excited to share that Oley is one of the newest members of the Center for Innovation & Value Research (formerly known as Innovation and Value Initiative, or IVI). The center’s mission is “Working to make sure that all patients have access to the right care at the right time.” Their goal is “To support the use of equitable, transparent, patient-centered evidence to drive better decisions in the development of therapies, research, and policy for better patient outcomes.”
Both of these align well with Oley’s mission and goals, and Oley is already serving on various projects and committees, such as the Patient-Centered Economic Impacts Project: Uncovering the True Cost of Healthcare. The center’s website notes, “According to the Kaiser Family Foundation, 45% of U.S. adults are worried about their ability to pay medical bills. More than 25% delayed or skipped care due to cost.” In the near future, Oley will be asking our members about economic impacts they are experiencing. If you would like to share your thoughts now, send them to info@oley.org. We’d love to hear from you.
To learn more about the Center for Innovation & Value Research, visit valueresearch.org. ■
Webinar: Mental Health & Chronic Illness
Watch the recording of our May webinar, Intersection of Mental Health & Chronic Illness, by Erica Smith, MSW, LCSW, today on the Oley Foundation YouTube channel. While originally mental health therapy practice may have been intended to support all, a lot of the practice and language actually originates from inherently ableist systems. These systems include what we are socialized to identify as “trauma” and “accessibility.” This presentation seeks to address some of these realities, and ways we can advocate for ourselves and our mental health. ■
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
2024-25 Calendar
Check Oley.org or other appropriate websites for the most up-to-date information on the events listed below.
Ongoing: Applications are being accepted for Oley Tim Weaver Camp Scholarship
August 23: Oley Community Connections
August 27: Oley webinar
September 16–20: Malnutrition Awareness Week
September 20: ASPEN/Oley webinar
September 24: Oley webinar
September 27: Oley Community Connections
September 28-30: Oley exhibiting at the AVA Annual Scientific Meeting, Boulder, CO
October 13–19: HPN (Home Parenteral Nutrition) Awareness Week
October 25: Oley Community Connections
November 22: Oley Community Connections
June 17–20, 2025: Oley 2025 annual conference, Primed and Ready to Grow, Charleston, SC
For more information, visit oley.org, email info@oley.org or call (518) 262-5079.
Additional Meetings of Interest
October 15–17: National Organization for Rare Disorders (NORD) Rare Diseases and Orphan Products Breakthrough Summit, Washington, DC
Oley Events
Community Connections
4th Friday of each month (typically) • 6:00 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.
Oley Events (cont.)
Webinars
School Readiness: Preparing Caregivers
and Schools for Nutrition Support Patients
Presented by Ashley Roberge-Boire, MSW, LICSW
AUGUST 27, 2024 • 10:00 AM ET
Hearing that your medically complex child can in fact attend school may be shocking, and determining how to facilitate matriculation can be overwhelming for both the caregivers and the school district. This presentation will provide you with important tools as well as guidance on how to navigate the process with your child’s school and medical team.
Ashley Roberge-Boire is a Licensed Independent Clinical Social Worker who practices medical social work at Boston Children’s Hospital for the Center for Advanced Intestinal Rehabilitation.
How to Do College with a Disability… You Have No IDEA in College
Presented by Jenifer Montag, EdD, NIC, CRC
SEPTEMBER 24, 2024 • 10:00 AM ET
Are you considering post-secondary education? Thinking about college? Are you enrolled in college but struggling? Not sure how to do college with a chronic health condition? Do you know what resources are available for you as you start college? For students going to college right out of high school, there is no IDEA/special education/IEPs or 504 Plans. Students work with the college disability services office to request accommodations. This session will share information about college disability service offices, requesting accommodations, advocating for access across campus, working with vocational rehabilitation, and connecting with campus, local, state, and national services/resources. It will also include tips on how families and friends can help support the student as they embark on this new journey. As always, questions will be welcomed and encouraged.
Jenifer Montag, EdD, NIC, CRC recently became the inaugural Associate Director of the National Center for College Students with Disabilities (NCCSD).
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. Community Connections and Webinars are offered free of charge.
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.
Cardinal Health
Cardinal Health is a global healthcare services and products company providing customized solutions across the continuum of care. The Cardinal Health™ Kangaroo™ Nutritional Delivery Portfolio offers a safe, innovative and complete solution of products that support pediatric and adult enteral feeding needs from the hospital to the home.
Coram CVS/ Specialty Infusion Services
Coram CVS/ Specialty Infusion Services provides highquality infusion care to patients where they live, work, or travel. With over forty years of experience, our dedicated team of clinicians and pharmacy staff brings personalized, compassionate support and ongoing care to our enteral and parenteral consumers across the country. Coram CVS/ Specialty Infusion Services leads with commitment from the heart and maintains a 96 percent patient satisfaction rating.
Kate Farms
Kate Farms was founded in 2012 by parents determined to help their daughter and is now the #1 recommended plantbased brand (per independent plant-based formula survey). Kate Farms offers nutritionally advanced formulas and shakes for children and adults designed for both tube feeding and oral use. They are available nationally and eligible for insurance coverage. Kate Farms products are Made for Tolerance with high-quality, science-backed, organic ingredients and without common allergens or artificial sweeteners, flavors, colors, or preservatives. Kate Farms formulas support tolerance, weight gain, and adherence. Visit katefarmsmedical.com and request samples for your patient or practice.
Moog
For over twenty years, Moog has designed reliable, and easy-to-use medical pumps. CURLIN Ambulatory Infusion Pumps offer flexibility and efficiency with precise and steady fluid delivery throughout the entire infusion duration. The portable and rugged Infinity Enteral Feeding Pump is the first and only 100 percent mobile enteral feeding pump. Both products are backed by our industryleading clinical support that assists customers and patients 24 hours a day, 7 days per week.
Nestlé Health Science
Nestlé Health Science is a leader in the science of nutrition, committed to redefining the management of health. We offer an extensive portfolio of science-based consumer health, medical nutrition, pharmaceutical therapies, and vitamin and supplement brands. Headquartered in Switzerland, we have more than 7,000 employees around the world, with products available in more than 160 countries.
New Partner! Vesco Medical
At Vesco Medical, we are committed to Feeding Life through our innovative solutions and comprehensive portfolio of enteral feeding products. Our new Q Pump sets a new standard in enteral feeding, embodying our dedication to Feeding Innovation. As pioneers in the transition to patient safety standards for small-bore connectors, we focus on what matters most: consistent quality and customer satisfaction.
Notable Individual Contributions
Among the contributions we receive, there are always several dedicated to those who have inspired the donor. We share the list of honorees below. We are grateful for the following gifts received from April 16 to July 19, 2024.
Memorials
In Memory of Jeff Dutton; Linda Gravenstein; Paula Southwick; Sharon Staak; Bob Sweet; those who suffered needlessly from those who should “do no harm”; Elizabeth Tucker; John Tucker
Tributes
In Honor of all those living on nutrition support; Jeffrey Nemeth
Matching Donation
United Healthcare Group
Fundraisers
Thanks to Julie Andolina, Betty Bond, Alaina McCormick, and Jennifer Taylor Parra for their fundraisers on Facebook.
