Summer 2022 LifelineLetter

Oley Corner Oley Calendar Tube Talk

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HPN Awareness Week Page 4 Celebrating Jim Wittmann

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Research Studies to Consider Page 5 Oley Award Winners Pages 6–8, 13 HPN Research Prize Winners Page 10 Oley Community Enrichment Programs Page 11 Welcome New Oley Ambassador Page 12 Thanks for Helping with Oley2022 Page 14 Helping Pediatric SBS Patients Transition to Adult Care Page 14 Donor News Pages 14–15 Important Announcement Page 16

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

Oley2022: A “Fantastic Way” to Connect and Learn Oley2022, “Alive, Well, and Even Better!,” was hosted virtually in August. Over the three days, participants heard from fellow enteral and parenteral nutrition consumers, caregivers and siblings, as well as experts in the field of nutrition support. If you missed any of the content, it’s not too late to watch.

Here’s what a couple of people who , Well, ve attended several sessions of Oley2022 thought of the experience: “I loved the virtual Oley conference.

Having a choice between parenteral nutrition, intestinal failure, and enteral nutrition [tracks] was an excellent idea. Now I really like hearing Dr. Kishore and all the advances in intestinal care, but splitting the conference into separate themes was wonderful.

“I loved the ‘show and tell’ aspect of the virtual topics in the home tube feeding/enteral track. The extended question and answer periods were especially great. Judging by the questions asked, there’s a definite need for that.

“I would like to see more virtual events. For me, it’s very easy to schedule my attendance and choose which topic I’d like to join.

“Overall, I thought the 2022 virtual conference was excellent. It reflected a lot of hard work from the Oley staff. I hope others had a similar positive experience.”

—Brian M. ”The Oley virtual conference was a fantastic way to connect with others in similar circumstances—to hear their unique stories, but also connect on deeply relatable experiences, given en and Ev how rare some of the conditions are.

It was also a great way to learn from world-class experts and access cutting-edge research and best practices that can be truly life changing. The conference is such a great opportunity for the community to get together, which is otherwise incredibly difficult given how spread out many of the individuals

Exciting Oley Updates

FDA Patient Listening Session Focuses on SBS

Staff Changes This summer, after nearly forty years of working for the Oley Foundation, Joan Bishop stepped down as Executive Director. Assuming the new title of Executive Director Emeritus, Joan will continue to be involved with Oley, helping the organization transition to a new executive director (see below), overseeing special projects, and helping to plan the 2023 Annual Conference, which is expected to be both in person and virtual, with dates and location to be announced shortly.

Joan started with Oley in 1984 as a program support person. After working in other roles at Oley, she became the executive director in 1999, overseeing the day-to-day operations, collaborating with Oley members, and networking with various stakeholders of the home nutrition support community. Joan is well known throughout community and, withher, a staff highly devoted to thethe Oley Foundation behind has

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Help along the way

Oley Conference, cont. pg. 4 ☛

positioned Oley well for future growth and activity.

“Joan has been an ever-present source of encouragement, information, and knowledge in the twenty years we have known and been part of the Oley family,” says Steve Atkinson, Oley Board Trustee. “She

The U.S. Food and Drug Administration (FDA) hosts patient listening sessions (PLS) as an opportunity for the patient and advocacy community to “share their experiences and perspectives…directly with FDA staff.”

They “help the FDA better understand what is most important to different communities and individuals who have specific health, medical, and treatment needs.” See fda.gov/patients/learn-about-fda-patientengagement/fda-patient-listening-sessions for more details.

What was the Short Bowel Syndrome PLS process?

On July 19, 2022, FDA held a PLS on short bowel syndrome (SBS). This came about because David Franco, the father of a child with SBS, wanted to utilize this platform to share SBS patient and caregiver lived experiences and hopes for the future. The Oley Foundation was invited to fill out a request for an FDA listening session and help develop the agenda, and then, when the request was accepted, to help identify other SBS patients and caregivers, coordinate the session, and later provide a written summary.

Oley Changes, cont. pg. 12 ☛

FDA Listening Session, cont. pg. 9 ☛

Oley Corner LifelineLetter Summer 2022 • Volume XLIII, No. 3

Publisher: The Oley Foundation Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054 (518) 262-5079, Fax: (518) 262-5528 oley.org Executive Director: Beth Gore • beth.gore@oley.org Executive Director Emeritus Joan Bishop • bishopj@amc.edu Editor, LifelineLetter; Director, Community Engagement: Lisa Crosby Metzger • metzgel@amc.edu Communications & Development Director: Roslyn Dahl • dahlr@amc.edu Director, Education & Initiatives: Amy Tarpey • amy.tarpey@oley.org Administrative Assistant: Cathy Harrington • harrinc@amc.edu Program Associate: Mary Wootten • marywootten.oley@gmail.com Science & Medicine Advisor: Manpreet Mundi, MD Medical Director/Co-Founder: Lyn Howard, MB, FRCP, FACP Oley Board of Trustees: Kelly Tappenden, PhD, RD, President; Lillian Harvey Banchik, MD, FACS, CNSC, FASPEN, Secretary; James Senese, BS Pharm, MS, Treasurer; Steve Atkinson; Lisa Epp, RDN, CNSC, LD; Shirley Huang, MD; Vanessa Kumpf, PharmD, BCNSP, FASPEN; John Mahalchak; Jerry Mayer; David F. Mercer, MD, PhD, FRCSC, FACS; Sharon Rose, RN Oley Advisory Council: 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 George-Thiemann, RN, CNS; Kathleen Gura, PharmD, BCNSP, FASHP, FPPAG, FASPN; Jocelyn Hill, MN, RN, CVAA(c), OCN, CRNI, VA-BC; Joy McVey Hugick; Kishore Iyer, MBBS, FRCS, FACS; Swapna Kakani, MPH; Barbara Kapuscinska Kelly, MD; Sue Koprucki; Jack Leibee; 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; and Marion Winkler, PhD, RD, LDN, CNSC Subscriptions: The LifelineLetter is a bi-monthly newsletter sent free of charge to those on home parenteral or enteral nutrition. There is no charge for others as well if they receive the newsletter electronically. Items published are provided as an open forum for the homePEN 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 above. Medical/scientific content contained herein has been peer reviewed by an Oley advisor or trustee.

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Our Mission ...is to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.

The Oley Foundation provides its 27,000+ 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 • Equipment Supply Exchange • Advocacy and Awareness

Resource Spotlight: Conference and Awareness Videos on YouTube Did you miss Oley2022, “Alive, Well, and Even Better!” in August?

You can find links to all of the slide presentations and recordings from this virtual conference at oley.org/2022ConferencePresentat ions. It’s a great way to catch anything you may have missed, and an easy way to share information!

You can also go straight to the Oley Foundation YouTube channel youtube.com/theoleyfoundation to find these, as well as recordings from past conferences, past webinars, Oley HPN and Feeding Tube Awareness Week videos, and more.

How to Support Oley Donations are tax deductible and are accepted at oley. org/donations or at the street address on left. We appreciate your support!

Summer 2022

Tube Feeding Tips

2022–2023 Oley Calendar COVID-19 continues to influence when and where gatherings occur. 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. Note: scholarships will be honored at a later date in the event of a coronavirus complication (i.e., camp closures, COVID-19 illness, self or mandatory quarantines, etc.).

October 6 (and then the first Thursday of every month): Nutrition Group 4 All Feeding Tube/TPN Support Group (virtual), hosted

by Oley Ambassador Crystal Killian* October 10–14: HPN (Home Parenteral Nutrition) Awareness Week (see page 4) October 12: Oley webinar “Collaborating with Your Care Team to Successfully Reduce or Wean HPN” (see page 11) October 12 (and then the second Wednesday of every month): Young adult (ages 18–35) support group (virtual), hosted by Oley Ambassador Darla Burr*

Tube Talk Send your tips, questions, and thoughts about home tube feeding (home enteral nutrition, or HEN) to metzgel@amc.edu. 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 Tubes Are Changing, Check Out This Resource!

We’ve been talking for some time about a new feeding tube connector with the trade name ENFit. As more health-care providers and facilities switch to ENFit feeding tubes, and as several manufacturers move away from making legacy products, we want to be sure you have the information you need to continue tube feeding successfully—whatever kind of feeding tube you have.

We have created an educational piece with lots of photos of different kinds of feeding tubes, syringes, adaptors, etc., and “tips and tricks” to help you avoid potential problems, or to figure out what to do when you get supplies that are not familiar to you.

Visit oley.org/NewENConnectors today to download a copy.

October 13 (and then the second Thursday of every month): Tube Feeding/TPN Virtual Support Group for Patients and Caregivers (virtual), hosted by Oley Ambassador Barbara Rudzin* October 27 (and then the fourth Thursday of every month): TPN Support Group for Consumers and Caregivers(virtual), hosted

by Oley Ambassador Amber Gates* *For more information on support group and Kidz Klub meetings go to oley.org/SupportGroups; for other meetings email harrinc@amc. edu or call (518) 262-5079.

Additional Meetings of Interest March 25–29, 2023: National Home Infusion Association (NHIA) conference, Washington, DC April 1–4, 2023: Infusion Nurses Society (INS) conference, Boston, MA April 20–23, 2023: American Society for Parenteral & Enteral Nutrition (ASPEN) conference, Las Vegas, NV

Volume XLIII, No. 3

(518) 262-5079 • LifelineLetter — 3

Oley News

HPN Awareness Week October 10–14, 2022 Helping Raise Awareness of Life with HPN Share Your 2022 HPN Awareness Activities with Us! During HPN (Home Parenteral Nutrition) Awareness Week last year, Bettemarie met with Pennsylvania Congressman Brian Fitzpatrick and taught him how to set up an HPN bag. Bette says, “I thought this would be a fun way to help him understand it better, and to give him something to think about when I talked to him about shortages and other issues relevant to home infusions!”

Bette’s home infusion company created a mock PN bag for her and she created a mock IV multivitamin. Bette says, “I gave a doll a central line so Congressman Fitzpatrick could flush the line and infuse through it.” Bette used extension tubing, cut off one end, and added a blunt needle so the mock solution drained into a plastic bag as it was infused.

Top left: Pump alarming high pressure—“We need to unclamp.”

Bottom left: Congressman Fitzpatrick asks,“What have you gotten me into!

Haha. Only joking.” It really did infuse through the baby’s central line into a baggie!

Oley Conference, from pg. 1

and resources are. It’s incredibly impactful to be able to connect and grow that sense of belonging and purpose.”

—Luccas B. Visit oley.org/oley2022 to view the conference program and for links to all of the conference videos, the “In Loving Memory” and Oley Awards presentations, Market Place, and information about the Oley virtual Walkathon. Our thanks to those who helped make Oley2022 a success. (Please see page 14.)

Attendees by the numbers: Home Tube Feeding: 291 Home IV Nutrition: 311 Intestinal Failure Workshop: 144 Grand total: 746 participants Unique attendees: 429 Conference Facts Countries represented = 14 Australia, Canada, Denmark, Germany, Ireland, Japan, Mexico, New Zealand, Poland, Romania, Singapore, South Africa, South Korea, Switzerland, United States States and territories represented = 49 All but Puerto Rico, American Samoa, Guam, Idaho, New Mexico, Northern Mariana Islands, Virgin Islands First time attendees = 163 Sponsoring Companies = 19

Be on the lookout for our 2023 annual conference dates and location.

Our plan is to offer an on-site, in-person conference, as well as continue to offer virtual, online options for our members who cannot attend in person.

Watch oley.org for updates on next year’s annual conference, as well as news about upcoming webinars and mini meetings.

Celebrating the Life of Jim Wittmann Jim Wittmann introduced himself and his family to us at one of at a time,” Jim remained positive; always appreciated and acknowlthe first Oley annual conferences, held in Saratoga Springs, New edged the loving support of his family, friends, and strong faith; and York. It was clear that Jim was there to learn found ways to give back to his community, and connect to others who lived similarly. As such as delivering Meals on Wheels. the years passed, we enjoyed Jim’s presence “Jim’s life was well spent, well lived,” at many meetings and gatherings. said his sister, Barbara. She continued, Jim was always curious about how to “He thoroughly enjoyed the movie It’s a stay safe on home parenteral (IV) nutrition Wonderful Life and could quote most of the (HPN), how to best manage the side effects actors’ lines by heart! We often wondered if of Crohn’s disease, and how he could help Jim realized his life had great significance, others overcome their struggles and live fuller hidden from public view." Jim passed away lives while dependent on HPN. in May of this year. The Oley family was Drawing on his grandfather’s wisdom to always close to his heart and his presence “keep climbing the ladder of life, one rung Jim and Don Y. both celebrated 40 years on HPN. and spirit will be missed always.

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Summer 2022

Research Studies

Research Studies to Consider The following research studies have been deemed appropriate for home parenteral and/or enteral nutrition consumers by the Oley Research Committee. (RDs, also see page 11.) However, the Oley Foundation strongly encourages anyone considering participating in medical research to discuss the issue with their managing physician before signing up. More information about these and other studies can be found at oley.org/Join_A_study.

An Observational Study about Parenteral Nutrition and Liver Disease Intestinal failure–associated liver disease (IFALD) is a rare and serious disease that may occur in patients dependent on parenteral (IV) nutrition (PN). It is usually characterized by choline deficiency (a nutrient that supports various bodily functions including cellular growth and absorption), steatosis (fatty change), hepatic steatosis (fatty liver), and cholestasis (reduction or stoppage of bile flow), and in some instances can progress to end-stage liver disease.

The purpose of this study is to: • Collect and understand data related to choline deficiency and the occurrence of liver disease in people dependent on PN for four or more days per week for the past six months or longer.

• Better understand the participants described above to figure out who might benefit from new treatments, including an intravenous (IV) choline chloride treatment.

Who can participate?

Adults and adolescents 12 years and older dependent on PN (four or more days a week) for six months or longer, in the primary care clinic setting.

This study is observational and does not involve the administration of any treatments. Decisions regarding the proper treatment and care for your PN regimen will continue to be made by your primary doctor during regular medical care visits.

Participation in this study will last up to ninety days and will include one or possibly two visits at the study site. Pending the outcome of the initial screening, an MRI may be performed as part of the study. You will be paid up to a total of $50 if you meet the conditions to complete both visits of this study.

Learn more, including criteria and study locations, by visiting ClinicalTrials.gov/ct2/show/NCT05011370. If you are interested in participating, speak to the health-care professional managing your PN. Central Line Research Study Researchers at UNC School of Medicine, Chapel Hill, North Carolina, are interested in better understanding the challenges and stressors related to accessing central venous catheters (CVCs)/ central lines for treatment infusions and parenteral (IV) nutrition (PN). Specifically, they are interested in the patient and caregivers’ perspective on loosening the connection point between the end of the CVC (the lumen hub) and the clave.

Research, cont. pg. 11 ☛

Volume XLIII, No. 3

(518) 262-5079 • LifelineLetter — 5

Oley News

Oley Award Winners Announced at Oley2022 Olivia Scali Rising Star Award Sponsored by Abbott Recognizes a consumer on home IV nutrition or tube feeding, 18 years old or younger, who shows a positive attitude in adapting to life on therapy which encourages and inspires others.

Olivia Scali’s nutrition support journey began when she was 13 months old. Initially diagnosed with severe reflux and failure to thrive, she was unable to maintain a healthy weight and started tube feedings with a G-tube. Unfortunately, this did not improve her symptoms and Olivia progressed to a G/J-tube at 18 months old. In hopes for answers, her family traveled back and forth from their home in Pennsylvania to Boston, Massachusetts, to seek care. Over the next 2 ½ years she underwent several tests and procedures to help her gain weight and find an underlying cause for symptoms.

Diagnoses including gastroparesis and gut dysmotility were identified, but no unifying cause was found. The travel began to take its toll, and the family Olivia Scali decided to move to Massachusetts. At age 4, Olivia’s medical team chose to split her G/J-tube in hopes of increasing her rate of feeds. By age 4 ½, it was decided she needed more than what she could tolerate, and she started home parenteral (IV) nutrition (HPN). Shortly after, Olivia was clinically diagnosed with mitochondrial disease, dysautonomia, and hearing loss in both ears resulting in bi-lateral hearing aids.

Despite living in a new place, Olivia was determined to be just like everybody else. Olivia attended school and enjoyed playing soccer. By age 8, the family felt confident enough in Olivia’s care to move back to Pennsylvania and resume care at a hospital there. As her family became more comfortable with her medical needs, they traveled to many places, such as Disney World, Hawaii, and Italy!

From a medical standpoint, Olivia has learned how to self-regulate, increase her oral intake, and make accommodations to her daily routine that allow her to do all the things she enjoys.

Today, she is thriving and able to attend school, and to participate in extracurricular activities, as well as advocate and support others within the gastroenterology community. Olivia is in the photography club at school and her photos were recently published in a local magazine.

She has displayed posters at school for Mitochondrial Disease Awareness Week to help others learn about her condition and implemented a “wear green” spirit day. She is a senior-level Girl Scout and enjoys volunteering at a local senior living community and selling cookies.

When the opportunity presents itself, she also attends organizational events to support awareness and advocacy for the nutrition support community. Olivia has attended the annual Digestive Disease National Coalition (DDNC) Public Policy Forum and the United Mitochondrial Disease Foundation Symposium in Washington, D.C., where she joined fellow patients and advocates on Capitol Hill to meet 6 — LifelineLetter • (518) 262-5079

with congressional members to share her story and promote change in current legislation, as well as increased funding for research toward advancing treatments and cures in digestive disease.

In addition to formal advocacy, Olivia also takes pride in making connections within the community. Pre-COVID, she attended four Oley annual conferences and has made long-lasting friendships with others on nutrition support. Most recently, Olivia was acknowledged for her participation in the Baxter/Oley Foundation 4EverBold Contest. Olivia won first prize in her age group for drawing a comic that exemplifies living life to the fullest despite needing HPN. If/when there is opportunity, she reaches out to others via social media. She is always there to support others.

Olivia has overcome many obstacles in her fifteen years. She continually demonstrates perseverance and resiliency in her daily life.

Congratulations Olivia, and to our nominees: Liam Brown, Damian Herrera, and Albert Otero.

Brittany Detrick Unsung HEN Hero Award Sponsored by Nestlé Recognizes a consumer on home tube feeding (enteral nutrition or HEN) or caregiver,19 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. Brittany writes, From the moment I was born in 1992, I was full of life and silliness. While I have not always been the one with the loudest voice, I have always been the one to make everyone laugh. I’ve never had problems making friends or leaving footprints everywhere I went. Shy has never been a description on anything that involves me.

I grew up with my fairly large family in northern California, moving around a little every few years until, when I was in sixth grade, we settled in San Luis Obispo, a little beach town on the California Central Coast. I participated in track, gymnastics, softball, horseback riding, and my favorite, competitive cheerleading. I raised pigs and sheep at Brittany Detrick the Midstate fair and grew up believing I was going to become a vet and a farmer. I have always had a heart for serving others.

At the end of high school, that energy of mine started to slowly fade away. I lost my smile, goofiness, and a lot of weight with little to no explanation outside of a possible eating disorder and anxiety.

It felt like I was doing double the amount of work for half the result.

I could no longer keep up, leading to what my family now calls “the dark days.” From 2010 to 2014 my life revolved around emergency room visits, gastroenterologists, ambulance rides, and months of being doubled over in abdominal pain crying for a solution. I weighed less than 100 pounds and had given up hope, accepting that this was Summer 2022

Oley News

my new normal and that death was near. After being diagnosed with gastroparesis and a slew of other diseases, I went from dreaming about my wedding to making sure that my parents and siblings would be OK with me being gone. I tried to keep my smile for those around me even though I was dying inside.

My story didn’t end there, though. After finally finding a tube feeding formula that worked for me and a few years on IV nutrition, I came around. I slowly got my life back. I moved home after being in Arizona for college and focused on getting better and making sure that I didn’t waste any time. It became my mission to taste everything life had to offer, knowing how short our time here really is. I have found ways to love those around me deeply. My family is closer than ever, and I am confident in every one of my friendships. I have seen beautiful places and hugged some of the best people. I got my spark back, along with a few wild and probably dark coping mechanisms. Sometimes I take dad jokes too far, but my love for life and uncanny zest for seeing the good has only gotten stronger.

Nothing could have prepared me for some of the things life threw at me. But every one of those moments led me to where I am today, with a deep understanding of how special it is to be here. It will never be easy, but it will always be worth it. My goal now is to love others, reminding them how worth it they are, and make my life a roadmap for someone else who might be going through the same things. Hard things will come, and I will have my hand out to hold.

I am not a leader or a follower but someone who will stand right by others while they face the good, bad, and ugly. Life really is like a box of chocolates—you don’t know what you are going to get. But I am here to taste every bit of what it has to offer. I hope the sweetness of my life can be shared for as long as I am here and that when my box is empty, someone else can say, “She ate every piece, even if it was bitter, so I know that I can, too.”

Congratulations to Brittany, and to our nominees: Amie Rhodes and Madeline Zolik.

Madeline Zolik Unsung HPN Hero Award Sponsored by Nutrishare Recognizes a consumer on home IV nutrition (parenteral nutrition or HPN) or caregiver, 19 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. Madeline writes, My name is Madeline Zolik, I’m 21 years old and I have been on home parenteral (IV) nutrition (HPN) since 2017. I’m from Wyoming, but I am now living in New York City for school. I’ve had gastrointestinal (GI) issues on and off my whole life, but it wasn’t until I was 14 that I required nutritional support. Years later I was diagnosed with chronic intestinal pseudo-obstruction, along with autonomic nervous system failure, gastroparesis, IBD, and chronic demyelinating, and axonal polyneuropathy.

After my intestines perforated, I became 100 percent dependent on HPN for nutrition and hydration. I was 16 at the time. Simply navigating high school seemed impossible—let alone navigating high Volume XLIII, No. 3

school attached to an IV pump. I felt alone, left on my own to figure everything out. Eventually I became connected with online support groups through the Oley Foundation, and I instantly became connected with people who understood exactly what I was going through. That feeling of solidarity is something I cannot begin to describe, yet I appreciate it endlessly. To quote Joan Bishop, the lovely and kind Oley representative who called to tell me I had won this award, “There’s an endless cycle of passion, of people wanting to help others, and in my forty years of working for Oley, I have yet to reach an end to that cycle.”

I wish I had had someone to show me the best HPN backpacks, central line Madeline Zolik hacks, and trouble-shooting techniques for those lovely (yet loud) IV pumps when I was 16. I wish I had had someone to tell me what to do if my ostomy bag fell off in public or what the best waterproof mattress covers were. But most importantly, I wish I had had someone to tell me that I was not alone. Having GI issues as a teenager was hard. I was often running out of class to throw up or use the bathroom, and I thought that my many medical devices made me “weird.” So I’ve made it a personal mission to help anyone I can, in any way I can. I know what it feels like to be lost, alone, AND sick, so I want to help others through that in the best way I can.

I’m currently an undergraduate student at New York University, majoring in Bioethics and Public Health Policy with a minor in Disability Studies. I’m navigating the pre-med track, hoping to become an MD/MPA specializing in pediatric palliative care. My goal is to practice medicine while addressing the issues in our public policy that affect the quality of health care patients receive. Admittedly, I did originally want to specialize in pediatric gastrointestinal disorders, but then I met my pediatric palliative care doctor, and she changed my life. She is one of the reasons I am even able to attend school now, so my heartfelt thanks goes out to her. At the end of the day, I will be content if I can help one person in the same way she has helped me.

I have a long road of school, surgeries, and possibly HPN/central line–related complications ahead of me, but so far I’m happy to be able to say that I am HPN dependent and attending school full time, away from home. I even got to celebrate my 21st birthday outside of the hospital (by a margin of a day!). I never thought I would actually get to go to college, so I am endlessly thankful HPN has given me that opportunity, and thankful to the Oley Foundation for connecting me with the people who have supported me throughout my journey. Most importantly, thank you to my family and parents for their constant support and undying faith in me and my success.

I’m truly blessed to have found, and to have been born with, such incredible support systems.

Congratulations to Madeline, and to our nominee: Brittany Detrick.

Award Winners, cont. pg. 8 ☛ (518) 262-5079 • LifelineLetter — 7

Oley News Awards, from pg. 7

Adam Roberson Caregiver Extraordinaire Award Sponsored by VectivBio 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.

Adam has been a husband and father for over twenty-two years. He currently works from home, creating learning content for medical software. Adam writes, “I enjoy the quiet moments when I can be creative, enjoy the outdoors, and travel with my wife. We live in the beautiful Shenandoah Valley of Virginia.”

Adam’s wife, Robin, writes, Adam been my lifeline since I was placed on home parenteral (IV) nutrition (HPN) seven years ago, following a vagal nerve injury I incurred during an anti-reflux operation. That injury resulted in post-vagotomy hypersecretory diarrhea, with diarrhea up to Adam & Robin Roberson thirty times a day as well as fecal incontinence and severe malabsorption. I was wasting away and could barely function at all. Adam has been by my side through the entire journey, which has required multiple diagnostic tests, surgeries, and the surgical placement of a port in my chest. After the port was placed, he requested that my home-health-care nurse teach him how to access the port and how to care for it. Since that time in 2016, he has accessed my port with a Huber needle every single week. He is so careful and incredibly gentle when performing the access. He helps prepare the HPN and fluids for infusion and gives vitamin B-12 injections to me.

He adds multiple vitamins, etc. to the HPN. Adam is meticulous in using sterile technique. To this date, I still have the same port and have never had a port or central line infection. I infuse HPN every other day and 1000cc of IV hydration every day! I have had some serious medical problems over the past six years to include hospitalizations, and Adam has never left my side. He is incredibly emotionally supportive as well. I have to be honest—hearing that I needed HPN and IV hydration every day was a really big disappointment at the time, but now I see that it saved my life and continues to sustain me in a stable and effective way.

During all this Adam has maintained a full-time job and helps to care for our special needs daughter. He has never complained and he has made my quality of life so much better than it would otherwise be. He has taken me on trips; we go camping and to the beach; and we enjoy spending time with our family, especially our grandchildren. He truly is an unsung hero who so willingly dedicates a large portion of his life to my care and well-being. Because of this I can be optimistic, and I do enjoy my life to its fullest capacity! Adam has such a willing heart and so much love for me and my care. I am truly so blessed by him, and without his level of love and commitment I most likely 8 — LifelineLetter • (518) 262-5079

wouldn’t have made it this far. I have accepted this lifestyle and try to make the most of every day; together we have conquered some pretty tough situations. We both accept that it is what it is and we still have a life to live, and by the grace of God we are making the best of every day. It could always be a worse situation.

It takes a very special person to place a needle in your wife’s chest every single week, but Adam stepped up without hesitation and is the best caregiver and husband that I could ever ask for! We have fun, are the best of friends, and we live a good and simple life. This year we will celebrate our twenty-third wedding anniversary, and we are both optimistic that we will have many, many more! Life really is what you make it!

Congratulations to Adam, and to our nominees: Amber Blalock, Brianne Coffey, Luisa Hernandez, Jamie Kosmerick, Carol Leibee, and Ryan and Theo Yoo. Donna Kloth, RN, CRNI, CNSC Distinguished Clinician Award Sponsored by Hanmi Recognizes a health-care professional practicing in the field of home IV nutrition, tube feeding or a related field, who sets an example by promoting innovation in nutrition therapy, or by advocating for someone in their care, and demonstrates a willingness to give of themselves, to educate, empower, and improve the quality of life for home IV nutrition and/or tube feeding consumers.

Donna writes, I am, and always will be, a nurse. I am passionate about it and have felt a “calling” of sorts to pursue caring for others since I was a young.

I watched my elders suffer illness or disease and pass and yearned to know more about the human body and its failings.

I have achieved many of my goals—to become a nurse, and to have a family and home in the city where I was born and raised, Cincinnati, Ohio. I knew nursing was an outstanding platform, but I never knew all the roads it would lead me to over forty years of practice.

The most rewarding of all has been to meet, teach, and support long-term nutrition support consumers. Most of my practice has been adult care, but I have incorporated pediatric care as well.

I have been very blessed over my years Donna Kloth, RN to meet other health-care professionals who have impacted my growth and development. Thanks to all of them for support over the years!

Besides my love and passion for nursing, I enjoy Scrabble and the game Words with Friends, as I enjoy the written word and had been an editor for my high school newspaper. I have considered a career in journalism and hope to publish a story or author a book. Other interests are music, movies, and playing card games. I am an avid “foodie,” with great interest in cooking, baking, and wines. I was once known as the Kahlúa fudge lady, and have enjoyed feeding my family, friends, neighbors, and many of my co-workers and patients. I hope to travel to some states I have not yet visited, especially Alaska.

Award Winners, cont. pg. 13 ☛ Summer 2022

Oley Advocacy News FDA Listening Session, from pg. 1

The FDA laid out the process, worked with us to finalize the agenda, and even facilitated several meetings leading up to this PLS. They were keen on hearing experiences, perspectives, and needs related to SBS, and not about drug, biologic, or device products.

Approximately sixty FDA staff from twentyfour different offices across five FDA centers attended this ninety-minute session, which included a twenty-plus-minute lively interactive question-and-answer period.

A gastroenterologist who specializes in pediatrics and transitioning to adult care was selected to share the medical overview of SBS, its causes and general complications. Seven patients and caregivers represented a timespan of as recent as two years to over thirty-five years of living with SBS. The final agreed-upon agenda included the topics of home parenteral nutrition; sleep disturbance; diarrhea; lifestyle accommodations; drug, device, and surgical options; and hope for future innovation in the field. A detailed summary of the topics can be found at oley. org/FDA_Listening.

What was happening behind the scenes?

The FDA attendees were engaged, many staying beyond the designated time to continue to get questions answered. Oley staff members Joan Bishop, Beth Gore, and Lisa Metzger participated in various behind-the-scenes roles, including coordination of agenda and participants, and notetaking. The FDA was helpful leading up to and during the process.

The patients and caregivers were supportive of one another throughout the process, often prompting each other with encouragement and agreeing on common and shared experiences. To allow patients and caregivers to share openly, these sessions are not recorded; the only takeaway is the written summary.

What’s next?

In speaking with various nutrition support stakeholder community members, Oley is beginning to work on advocacy plans for 2023 and beyond. Included in the discussion of options are: • Qualitative Patient Experience Research topics • Submission for an FDA PLS on the topic of home parenteral nutrition • National summit on the components of care for intestinal failure/nutrition support • National/International Home Nutrition Support Patient Bill of Rights

These big-picture efforts are meant to build on the momentum gained with this PLS and complement existing advocacy efforts, such as increasing general awareness of home tube feeding and parenteral nutrition; gaining passage of legislation that will help increase patient access to care, and coverage of tube feeding formula; and addressing drug shortages, particularly as related to home nutrition support.

How can you get involved?

Consumers and Caregivers: Oley wants to identify people who are willing to share their journey. One way we identify both the nature and needs of our community and the individuals within it who may help represent these, is through our database. The more complete this information is, the better we know whom to call on for future advocacy efforts, potential volunteer opportunities, speaking engagements, clinical or market research, etc. Please sign in at oley.org and update your profile.

Clinicians and Professionals: We are seeking people interested in supporting Oley through speaking engagements, task forces, committees, creating or editing quality education content, and other volunteer opportunities.

Industry and Corporations: Oley is seeking collaborative resources, trends in the community, expertise, innovation, dialogue, and funding. If you are a partner organization, you are already part of the Oley Industry Advisory Council. If you are not but would like to know the benefits of Oley Partnership, contact Beth Gore at beth.gore@oley.org. Please update your profile, too!

Anyone: Drop us a line at info@oley.org.

Disclaimer Discussions in FDA Patient Listening Sessions are informal. All opinions, recommendations, and proposals are unofficial and nonbinding on FDA and all other participants. This report reflects the Oley Foundation’s account of the perspectives of patients and caregivers who participated in the Patient Listening Session with the FDA. To the extent possible, the terms used in this summary to describe specific manifestations of short bowel syndrome, health effects and impacts, and treatment experiences, reflect those of the participants.

This report is not meant to be representative of the views and experiences of the entire short bowel syndrome patient population or any specific group of individuals or entities. There may be experiences that are not mentioned in this report.

Volume XLIII, No. 3

(518) 262-5079 • LifelineLetter — 9

Medical Update

HPN Research Prize Winners Announced at Oley2022 The HPN Research Prize, sponsored by Nutrishare, Inc., was established to encourage clinical research focused on improving the quality of life for home IV (or parenteral) nutrition (HPN) consumers. It is awarded to the top three clinical research papers that best align with Oley’s mission of enhancing the lives of HPN patients and generate interest among HPN patients and improve their well-being. This year’s winners are Hassan Dashti, PhD, RD; Kristy Feeney, MS, RD, CNSC; and Jenny Yu, MD. Overviews of, and key takeaway messages from, their research is below.

Sleep Patterns of Patients Receiving HPN, A Home-Based Observational Study Hassan Dashti, PhD, RD Sleep plays an essential role in physical and mental health. For many patients supported with HPN, a good night’s sleep may be difficult.

The widely adapted practice of infusing HPN overnight for convenience and daytime mobility may impact the restorative process of nighttime sleep. To better understand the impact of HPN on sleep, Dr. Dashti led the Sleep Health Study along with a team of researchers at Massachusetts General Hospital. This was a week-long, fully remote, observational study conducted entirely at the participants’ homes. Participants were asked to use a wrist-worn device similar to a Fitbit or Apple Watch called Actiwatch, which was mailed to the participants’ homes to monitor sleep over a seven-day period.

Key Takeaways • A small group of twenty HPN consumers participated in this study, during which metrics measuring sleep patterns and quality were obtained.

• 85% of participants experienced significant sleep disturbances as classified by the Pittsburgh Sleep Quality Index • 100% of participants awoke earlier than the recommended time from falling asleep to waking as suggested by the National Sleep Foundation • Further research is recommended to develop guidelines and interventions to improve sleep quality for HPN consumers Food for Thought If you are an HPN consumer experiencing sleep disturbances, ask your care team: • What, if any, changes can be made to my HPN regimen to help me achieve better sleep?

• I think <insert problem(s) here> may be contributing to poor sleep.

What are your thoughts? Is there anything that can be changed to help me achieve my sleep goals?

Catheter-Related Bloodstream Infection Rates in HPN Patients Receiving Sodium Bicarbonate Lock Therapy Compared to Ethanol Lock Therapy Kristy Feeney, MS, RD, CNSC Historically, ethanol lock therapy (ELT) was utilized for the prevention of catheter-related bloodstream infections (CRBSI) in patients receiving HPN, one of the biggest threats to patients with a central line. Since ethanol was recently approved for a specific cardiac condition and subsequently underwent a significant price increase without a modality for reimbursement, some HPN prescribers and institutions have been searching for more cost-effective lock therapies, including 10 — LifelineLetter • (518) 262-5079

sodium bicarbonate. To understand how ELT compared with sodium bicarbonate lock therapy, CRBSI rates in both pediatric and adult HPN patients administering 8.4% sodium bicarbonate lock therapy (SBLT) were measured against an earlier time period when the same patients were administering 70% ELT. Key Takeaways • A lock therapy is the instillation of a substance in the catheter lumen which stays in the lumen between infusion periods and is removed or flushed through before infusing again.

• CRBSI rate data for a small group of twenty-four patients was compared for two different one-year time periods, one in which ELT was used, and one in which SBLT was used.

• CRBSI rates during the SBLT time period were lower than during the ELT time period but not statistically different.

• The researchers concluded that SBLT may have similar efficacy to ELT in preventing CRBSI in HPN consumers; however, larger studies are needed to confirm this.

Food for Thought If you have had one or more CRBSI in the past year, or if you have immunodeficiency, ask your care team: • What options are currently available for catheter locks? Which of these would be best for me?

• What are the reasons you chose <insert current lock therapy here> for lock therapy? Are there other options available to me that we could explore?

Incidence and Development of Cholestasis in Surgical Neonates Receiving an Intravenous Mixed-Oil Lipid Emulsion L. Jenny Yu, MD (BIDMC) Intestinal failure–associated liver disease (IFALD) is a complication in neonates dependent on parenteral nutrition (PN). Soy oil–based lipid emulsion (SOLE) was the only FDA-approved initial parenteral lipid source for children in the United States, and yet SOLE has been implicated in the pathogenesis of liver dysfunction in PN-dependent patients. As such, one preventive and therapeutic strategy focuses on the use of lipid emulsions formulated with alternative oil sources. A mixed-oil lipid emulsion (MOLE) composed of soy oil, MCT, olive oil, and fish oil had gained popularity for off-label use in infants and children at risk for developing IFALD, and recently became the first mixed-oil intravenous lipid emulsion (ILE) approved by the FDA for use as an initial lipid source in infants and children on PN. Given the presence of soy oil in MOLE, Dr. Yu and her team hypothesized that when used at doses to prevent essential fatty acid deficiency (EFAD), MOLE is not effective at preventing cholestasis in surgical neonates. A retrospective cohort analysis of neonates with gastrointestinal surgical conditions necessitating PN for fourteen days or more and receiving MOLE was conducted and compared to a historical cohort of surgical neonates receiving SOLE. Neonates with gastrointestinal surgical pathologies receiving MOLE compared to those receiving SOLE had higher incidence of cholestasis or IFALD. Key Takeaways • Historical data from two groups of infants on HPN due to gastrointestinal surgical conditions were compared, one group of 16 receiving MOLE, and one group of 136 receiving SOLE. Summer 2022

Medical Update

• The group receiving MOLE had higher rates of cholestasis (63%) than the group receiving SOLE (22%).

• The researchers concluded that MOLE does not prevent cholestasis.

• Randomized controlled trials are needed to confirm this conclusion in the neonate population.

Food for Thought If your infant is receiving HPN including lipids due to gastrointestinal surgery, ask your care team: • What were your reasons for choosing this lipid emulsion?

• What are the risks and benefits of this emulsion and the other emulsions available (FOLE, MOLE, SOLE)? ¶ Research, from pg. 5

They are seeking patients and caregivers for a one-hour focus group session held via Zoom. During the session, participants will be asked questions related to living with and caring for CVCs. The session will be audio-recorded and transcribed for analysis. Identifying information will not be included in the transcription. Prior to the session, participants will be asked to complete a brief demographic questionnaire.

The purpose of this study is to improve safety measures and reduce stressors associated with difficulty in removing the clave from the hub of the CVC (known as a “clave seizure”) when patients and caregivers try to change the clave. The primary outcome is to document the types and frequency of methods employed, current disinfection techniques, and the stressors of those caring for and accessing CVCs. More about this study: • Total active participation is expected to be approximately 90 minutes.

• Two human factors researchers will moderate the focus groups.

• The greatest risk of this study is the potential for loss of confidentiality.

Eligibility: • Patients must be 18 years or older; have a currently placed CVC; and require access and care of CVC within in-home settings.

• Caregivers must be 18 years or older; and identified as the primary caregiver of the patient living with a CVC. Participation is voluntary, and responses will be kept confidential. Upon completion of the study, participants will receive a $25 gift card. Contact Amy Cole, at amy_cole@med.unc.edu, for more information.

Survey for Registered Dietitians: Evaluating Current Feeding Practices in Patients with Post-Pyloric Tubes Dr. Amy Spurlock and Ms. Jennifer Marsh, faculty members at Boise State University, in collaboration with Dr. Teresa Johnson at Troy University, are conducting a research study to examine current practices, if any, related to blenderized tube feeding (BTF) use in post-pyloric tubes among registered dietitians. More information and a link to the survey at oley. org/Join_A_study.

Volume XLIII, No. 3

Oley Community Enrichment Programs —Education, connection, and hope through Mini Meetings and Webinars Oley’s Community Enrichment Programs offer an opportunity to learn the latest information, and about advocacy and research.

They are coordinated for consumers and family members/caregivers, but everyone is encouraged to attend and learn!

Webinars “Collaborating with Your Care Team to Successfully Reduce or Wean HPN” October 12, 2022 | 1:00 p.m. EDT/10:00 a.m. PDT Panelists: Carolyn Newberry, MD, PNS; Assistant Professor of Medicine Innovative Center for Health and Nutrition in Gastroenterology (ICHANGE), Division of Gastroenterology and Hepatology Weill Cornell Medicine Jessica Younkman, RD, LD, CNSC; Clinical Dietitian Soleo Health Alan Segal; HPN Consumer, weaned after more than 30 years on PN Sponsored by

(518) 262-5079 • LifelineLetter — 11

Oley News Oley Changes, from pg. 1

has been an unwavering supporter, advocate, and champion for not just our family, but for countless others that she has touched through her work and leadership of the Oley organization. She has provided much needed personal encouragement in our twenty-year journey with parenteral nutrition and gave us hope and community when it was needed the most. My wife, Leah, our son Jameson, and I wish her nothing but the best as she looks forward to retirement and the rewards it brings.”

The Oley Board of Trustees has selected Beth Gore, PhD, to serve as the new Executive Director. Beth has been working closely with Joan—and will continue to­—during the transition period.

Beth and her husband, Daniel, live in Tampa, Florida, with their six children. Manny, their youngest, has lived on nutrition support since the age of 9 months. Now 13 years old, he continues to receive home IV (parenteral) nutrition and is on and off tube feeding.

Beth brings a variety of skills and experience with her to Oley. She has a PhD in training and has worked for other non-profit

associations in various capacities. She is also a sought-after keynote speaker on patient safety and has served on numerous boards. Before assuming this position, Beth was President of the Oley Board of Trustees. Beth has participated in national patient safety task forces and coalitions, believing the patient perspective is of utmost importance to any national or systemic change. “My life mission statement is ‘speaking for those who cannot speak for themselves,’” she says.

We are also excited to welcome Amy Braglia-Tarpey, MS, RD, CNSC, to the Oley staff as the Director of Education and Initiatives. Amy has been a registered dietitian for nearly twenty years. She has earned the designation of board-certified specialist in renal nutrition and is currently a certified nutrition support clinician.

Amy started her career as a renal dietitian, working with CKD stage 1-4 and dialysis patients, and collaborating on renal nutrition research. Her love for nutrition support eventually led her to acute care and then home infusion, which fulfilled her passion

Welcome New Oley Ambassador Would you like to speak with someone who has “been there, done that”? Call an Oley Ambassador. For a complete list of Ambassadors, visit oley.org or call (518) 262-5079.

Note: Ambassadors volunteer to provide peer support for HPEN patients and family members. They are not medical professionals and do not offer medical advice. Please do not contact Oley Ambassadors for solicitation, marketing, or research purposes. Meet our newest Oley Ambassador, Amber.

Amber Gates Amber and her daughter Melanie live in Rochester, Minnesota. Melanie has been on home IV (parenteral) nutrition (HPN) for fifteen years. Over the years, Melanie has been tube fed, too, via NG-tube, G-tube, J-tube, and GJ-tube.

Currently she is fully HPN dependent, with a GJ for drainage and medications.

Amber, with Melanie, has experience with numerous surgeries, blood transfusions, ICU stays, PICC lines, ports, central venous catheters (CVCs), ostomy, and neurogenic bladder. Melanie also has a bleeding disorder and is immunocompromised. Amber administers biweekly infusions of IVIG at home. Melanie has overcome a number of life-threatening infections. She is Amber Gates currently on palliative care. Melanie loves to find ways to bless others through gifting homemade projects like diamond art and crocheted crafts.

Amber hosts a virtual support group for HPN consumers and caregivers on the fourth Thursday of each month. She is excited to connect with other families and to help support and answer questions about HPN, feeding tubes, ostomies, palliative care, etc. Email Amber with your questions or to RSVP for the support group at sagates314@gmail.com.

12 — LifelineLetter • (518) 262-5079

Summer 2022

Oley News

for working with long-term IV nutrition and tube feeding consumers. Amy has authored journal articles, posters, and patient-focused education pieces on nutrition, and served as the editor of the peerreviewed Renal Nutrition Forum. Most recently, she worked to create safe transitions for IV nutrition and tube feeding consumers and enhance support systems as National Nutrition Manager for Coram/ CVS specialty infusion. Amy says, “I am excited to be a part of the Oley Foundation team, and spearhead programs to improve the lives of nutrition support consumers.”

After twenty-seven years of serving members, Roslyn Dahl, Director of Communications and Development, is moving on to new challenges.

Roslyn shares, “It has been a privilege to have worked with and learned so much from the Oley community.” She will be greatly missed.

Board Updates We are pleased to announce that Kelly Tappenden, PhD, RD, FASPEN, will serve as President of the Board of Trustees. Dr. Tappenden served as the Vice President and is well familiar with Oley and the needs of its members. She is a professor and head of the Department of Kinesiology and Nutrition at the University of Illinois at Chicago.

Her research program focuses on intestinal failure, mechanisms of intestinal adaptation, and patient malnutrition. For these contributions, she has received multiple awards. She has published over one hundred peer-reviewed papers and delivered over four hundred invited lectures.

In addition, Dr. Tappenden has served as president of the American Society for Parenteral and Enteral Nutrition (ASPEN); chair of the Nutrition, Metabolism and Obesity section of the American Gastroenterology Association Institute; and editor-in-chief of The American Journal of Parenteral and Enteral Nutrition.

We are pleased, too, that Shirley Huang, MD, has rejoined the Oley Board of Trustees. Dr. Huang is an academic general pediatrician in Boston, Massachusetts, with a special interest in children with medical complexity. She has three children. Her daughter, Janie, who was born in 2008, has short bowel syndrome and liver disease, and has been dependent on home IV nutrition and tube feeding. Janie has undergone numerous surgeries over the years. Dr. Huang previously served on the Oley Board of Trustees and brings with her, among other things, experience and organizational knowledge.

We invite you to share your stories or memories about Joan and Roslyn, and to welcome Beth and Amy to the Oley Foundation staff and Drs. Tappenden and Huang to the Oley Board of Trustees. Please send your comments to the editor (Lisa Metzger, metzgel@amc.edu or see address on page 2). ¶ Awards, from pg. 8

I am a social person in my personal life, so COVID has greatly impacted my interpersonal relationships and networking with friends.

I am hopeful to meet and learn from many others through my career and lifetime. Thank you, Oley, for this Distinguished Clinician Award!

Congratulations to Donna, and to our nominees: Sivan Kinberg, MD, MA; Vanessa Kumpf, PharmD, BCSNP, FASPEN; Reid Nishikawa, PharmD, BCSNP, FASPEN; Christina Richey, MS, RD, LD, CNSC. ¶ Volume XLIII, No. 3

(518) 262-5079 • LifelineLetter — 13

Oley News

Thanks for Helping with Oley2022 “Alive, Well, and Even Better”!

Be

tter !

Ali

Our heartfelt thanks to the people who helped make Oley2022 “Alive, Well, and Even Better” a smashing success! To the faculty who prepared and presented information without compensation; to those who helped shape the program; to the corporate partners who sponsored activities, videos, the webpage, etc; and to attendees who shared their experiences—a huge thank you.

Faculty and Conference Coordinators Joan Bishop; Alan Buchman, MD, MSPH, FACN, FACP, FACG, AGAF; Hassan S. Dashti, PhD, RD; Mary Beth Hovda Davis, MSN, RN, VABC; Rick Davis; Mark DeLegge, MD; Vicki Emch, MS, RD; Lisa Epp, RDN, LD, CNSC; Kristy Feeney, MS, RD, CNSC; Beth Gore, PhD; Zoe Gore; ve, W Carol S. Ireton-Jones, PhD, RDN, LD, CNSC, FAND, FASPEN; Kishore Iyer, MBBS, FRCS, FACS; Swapna Kakani, MPH; Sivan Kinberg, MD, MS, MA; en Mary Kuehl, MS, RD; Vanessa Kumpf, and Ev PharmD, BCNSP, FASPEN; John Mahalchak; Katie Marschilok, RN, MSN; Manpreet S. Mundi, MD; Cynthia Reddick, RD, CNSC; Marion Winkler, PhD, RD, LDN, CNSC; Lumeng Jenny Yu, MD Activity, Video, Webpage, Award, etc. Sponsors 9 Meters BioPharma; Abbott; Amerita; Avanos; B Braun; Baxter International; Coram / CVS specialty infusion services; Fresenius Kabi USA; Kate Farms; Moog Medical; Nestlé Health Science; Nutrishare; Option Care Health; Optum Infusion Pharmacy; Real Food Blends; Soleo; Takeda Pharmaceuticals; VectivBio; Zealand Pharma Speaker Support Aveanna Medical Solutions; Boston Children’s Hospital; Brown University School of Medicine; Columbia University Irving Medical Center; Coram/CVS specialty infusion services; Massachusetts General Hospital, Harvard Medical School; Mayo Clinic; Medical University of South Carolina; Mount Sinai Medical Center; Nutrishare, Inc.; Shield HealthCare; University of Illinois/UI Health; University of Iowa’s Stead Family Children’s Hospital; Vanderbilt University Medical Center Special acknowledgement to • 4umedical designs for providing stickers, and Misty Staley a game, for the Jammin’ Jammies goody bag • Amber and Mark Cox, Tracey Giambertone, and Misti Staley, for entertaining the youth in Jammin’ Jammies • Don and Alex Fisher/Magic Wig, for providing technical and moral support • FreeArm Tube Feeding + Infusion, for providing three FreeArm Muscles for the Market Place Challenge prizes • John Mahalchak, for sharing his story with our Corporate Partners • Bettemarie Bond, Darla Burr, Tiffany Dodd, Tonya Henry, Rose Hoelle, Emily Hoopes, Shirley Huang and Ryan Yoo, Crystal Killian, John Mahalchak, and Carol Pelissier, for helping plan and host social hours. ¶ 14 — LifelineLetter • (518) 262-5079

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.

Avanos Enteral feeding is a vital lifeline. Turn to Avanos for solutions to help you or your loved-one thrive. Avanos develops, manufactures, and markets recognized brands in more than ninety countries, including MIC-KEY*, CORTRAK*. FARRELL*, CORGIP*, NEOMED ®, MIC* PEG and other enteral feeding accessories.

Nutrishare, Inc.

Nutrishare is the only home infusion pharmacy specializing exclusively in total parenteral nutrition. The company says its specialized focus enables it to improve quality of life for its patients by facilitating nationwide travel, empowering them to choose the supplies best for them, and providing them with a dedicated clinical expert overseeing their care.

VectivBio

VectivBio is a global biotechnology company committed to improving the lives of people with short bowel syndrome and intestinal failure (SBS-IF). The company is partnering with specialist medical teams, patients, and families on the global STARS trial. To learn more, visit SBStrial.com.

PB — LifelineLetter • (518) 262-5079

A Resource for Peds with SBS Transitioning to Adult Care Medscape, in partnership with the Oley Foundation and the American Society for Parenteral and Enteral Nutrition (ASPEN), created an educational tool called “Short Bowel Syndrome: A Roadmap for Care Transition,” with a goal to improve the transition of care as patients age out of pediatric programs and into the adult care settings. This guide will also help parents and young adults understand more about this transition and can guide them as they move forward.

This resource covers a lot of information in three parts: (1) “The Patient Story: Disease Burden, Quality of Life,” by Swapna Kakani, MPH, and Marion Winkler, PhD, RD, LDN, CNSC; (2) “Coordination of Care Transitions from Pediatric to Adult Care,” by George V. Mazariegos, MD, FACS; and (3) “A Patient-Centered Medical Home Roadmap for IF/SBS,” by Vanessa Kumpf, PharmD, BCNSP, FASPEN, and Swapna Kakani, MPH. Note: The two patient handouts may be useful for those with, or those caring for someone with, SBS: (1) “What to Know About Short Bowel Syndrome”; and (2) “Short Bowel Syndrome: What to Know as Your Child Gets Older.”

Access this valuable resource (for free) at medscape.org/ viewarticle/958121?src=acdmpart_oleyfoundation_958121. Medscape subscription not needed. ¶ Summer 2022

Volume XLIII, No. 3

Contributor News Donor

Notable Individual Gifts 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 March 11 to August 1, 2022.

Memorials: In memory of Mary and Casey Barron; Hadar Birger-Bray; Larry H. Crawford; Jeremiah Lynch; Lady Jean Martin; “my grandparents, Tzipora and Yehuda Nutes”; Adrian M. Oleck, MD Tributes: In honor of Tim Arends’ twenty-five years with Dorsey & Whitney, LLP; in appreciation of Joshua Gearheart, the 2021 Kyle Noble Scholarship honoree; Reading Keller; Aidan Koncius; Jeff Nemeth; Lynn Wolfson’s birthday Fundraisers: AmazonSmile (online shopping); Facebook birthday campaigns

by Betty Bond, Melinda Fisher, Becky Krowas, Wendy Warren Merritt, Debbie Saffren, and Sue Siegel Undreiner; Phil Kellerman’s ongoing political memorabilia fundraiser on Ebay Matching Gifts: Air Products; American Family; Johnson & Johnson 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.

Oley Horizon Society (518) 262-5079 • LifelineLetter — PB

Many thanks to those who have arranged a planned gift to ensure continuing support for HPEN consumers and their families. Learn how you can make a difference by calling (518) 262-5079 or visiting oley.org/plannedgifts.

Felice Austin Jane Balint, MD John Balint, MD Joan Bishop Ginger Bolinger Pat Brown, RN, CNSN Faye Clements, RN, BS Katherine Cotter Jim Cowan Rick Davis Ann & Paul DeBarbieri David & Sheila DeKold Dale & Martha Delano Tom Diamantidis, PharmD Gail Egan, MS, ANP Selma Ehrenpreis Herb & Joy Emich Jerry Fickle Don Freeman Linda Gold Linda Gravenstein Deborah Groeber

Volume XLIII, No. 3

The Groeber Family Valerie Gyurko, RN Alfred Haas Shirley Heller Alicia Hoelle Jeff & Rose Hoelle Lyn Howard, MD William Hoyt Portia & Wallace Hutton Kishore Iyer, MD Doris R. Johnson Darlene Kelly, MD, PhD Family of Shirley Klein Jim Lacy, RN, BSN, CRNI Robin Lang Joyce Madden Hubert Maiden Laura Matarese, PhD, RD, LDN, CNSC, FADA, FASPEN Kathleen McInnes Michael Medwar Meredith Nelson Nancy Nicholson

Rodney Okamoto, RPh, & Paula Okamoto Kay Oldenburg Harold & Rose Orland Judy Peterson, MS, RN Clemens Pietzner Beverly Promisel Abraham Rich Wendy B. Rivner Roslyn & Eric Scheib Dahl Susan & Jeffrey Schesnol Doug Seidner, MD, FACG, CNSP Judi Smith Steve Swensen Cheryl Thompson, PhD, RD, CNSC, & Gregory A. Thompson, MD, MSc Cathy Tokarz Eleanor & Walter Wilson Marion & Larry Winkler James Wittmann Patty & Darrell Woods Rosaline Ann & William Wu

News

Oley Corporate Partners The following companies provide over one-half of the funds needed to support Oley programs. Corporate relationships also strengthen our education and outreach efforts. We are grateful for their strong commitment.

TITANIUM LEVEL PARTNER ($150,000+) Takeda Pharmaceutical GOLD MEDALLION PARTNER ($50,000–$69,999) 9 Meters Biopharma SILVER CIRCLE PARTNERS ($30,000–$49,999) Coram / CVS specialty infusion services Zealand Pharma BRONZE STAR PARTNERS ($20,000–$29,999) Abbott Baxter International Inc. Cardinal Health, Inc. Fresenius Kabi USA Kate Farms Med-IQ Option Care Health Optum Infusion Pharmacy VectivBio BENEFACTOR LEVEL PARTNERS ($10,000–$19,999) Avanos Nestlé Health Science PATRON LEVEL PARTNERS ($5,000–$9,999) Amerita, Inc. B. Braun Medical Inc. MOOG Medical Nutrishare, Inc. Real Food Blends Soleo Health

(518) 262-5079 • LifelineLetter — 15

LifelineLetter

☎

The Oley Foundation Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054

NON-PROFIT ORG. U.S. POSTAGE PAID PERMIT NO. 687 ALBANY, N.Y.

Want a paper copy of the newsletter?

Contact us by December 31, 2022, at (518) 262-5600 or oleyfoundation@gmail.com.

Conser ving Resources, Without Sacrificing Ser vices ANNOUNCEMENT: We are making changes to the LifelineLetter. As printing costs continue to go up, we’ve been considering how we can conserve Oley Foundation resources while still meeting our members’ needs. This has led to the following changes.

1. Printed LifelineLetter newsletter by request only. Do you want to continue getting a paper copy of the LifelineLetter? Do you have limited access to or find the internet hard to use? Do you share your paper copy with your health-care provider or others, or carry it with you to read in a waiting room? If so, act now!

If you need, want, and use a paper copy of the newsletter for whatever reason, contact us by December 31, 2022, at (518) 262-5600 or oleyfoundation@gmail.com.

Leave a message or email us the following: Your name and address as they appear on the mailing label of the newsletter; your phone number, in case we have questions; any corrections to your name and address as they appear on the mailing label.

If we don’t hear from you by December 31, 2022, and we have an email address for you on file, we will add you to the list of Oley members who get an email with a link when a new issue of the newsletter is available on our website. No action = no printed copy of the newsletter.

2. Enhance the digital experience. We will make the online version of the newsletter easier to read, download, and share, with keyword searches and active links. The new digital version of the newsletter will be unveiled soon on oley.org. Watch your email for an announcement!

Want a paper copy of the newsletter?

Contact us by December 31, 2022, at (518) 262-5600 or oleyfoundation@gmail.com.

3. Go quarterly. Moving to a quarterly newsletter while increasing our engagement with members through other channels, including social media, will allow us to conserve resources while also being more timely in sharing news and announcements. You should notice changes soon, primarily in email and on social media.

For those without internet access: We don’t want to lose you! Remember to reach out today to keep getting the LifelineLetter delivered

by US mail. Also, the Oley office and Oley Ambassadors are always just a phone call away whenever you need information or support.

Feedback? Ideas? Email the editor at metzgel@amc.edu or call (518) 262-5079.