Annual Conference Program

Smile! You’re on Camera!

Oley will be taking photos and videotaping throughout conference sessions and special events. These images may be used online or in Oley materials without further agreement.

If you do not want to be photographed at the conference, please pick up a "No Pictures" pin at the Oley registration desk and wear the pin on the lanyard of your badge holder where it is visible.

If possible, please e-mail your name and an image (so we can identify you) to Lisa Metzger at metzgel@amc.edu. We cannot guarantee that your image will not appear in group shots or on video filmed at the conference, but we will do our best not to publish close-up photos.

In addition, the general sessions will be streamed live to our virtual attendees and recorded for future viewing. Please keep this in mind when choosing to disclose personal information during a session or Q&A.

Roundtables and Breakout Sessions will not be streamed.

If you have additional questions or concerns, please connect with an Oley Staff or Board Member.

Welcome to Oley 2023!

It’s here! We’re delighted that you have joined us for the 2023 Oley conference, Gateway to the Future. Whether you are a consumer, caregiver, clinician or manufacturer, we welcome you to the “room where it happens” and know that it’s these multiple and shared perspectives that make our community stronger.

If you’re joining us for the first time, don’t be shy. We’re eager to meet you and welcome you into our community. And if you are back for your twentieth conference, thank you for serving as a key member of our community. Oley wouldn’t be the vibrant supportive group that it is without long-term members such as you!

In addition to presentations by experts in the field of home IV nutrition and tube feeding, there will be many opportunities to meet other attendees and socialize. New this year is a fashion show and karaoke night! These are in addition to traditional events such as the silent auction, Jammin’ Jammies, walk and roll-a-thon, and picnic. And you won’t want to miss our opening 1980s-themed gala! The exhibit hall is always a great place to learn about novel products, meet friends and find the support you need.

Finally, please be sure to attend our keynote address entitled, “Help Along the Way: Celebrating Oley’s 40-Year History.” Not only will learn about, or even relive, Oley’s first forty years, it will surely inspire us to envision the path to our next forty years. And this will be the opportunity to thank Joan Bishop, Oley Executive Director Emeritus, and Dr. Lyn Howard, Oley Co-Founder, for their vision and tireless leadership in building our great community.

Many thanks to our staff led by Beth Gore, who has completed a successful year as our new Oley Executive Director. Please stop any Oley staff or Board of Trustee members as you see us—we want to hear from and spend time with you!

Welcome to St. Louis—enjoy Oley 2023!

Kelly Tappenden, PhD, RD, FASPEN President, Oley Foundation Board of Trustees

and Land Acknowledgement and Land Acknowledgement

The Oley Foundation does not discriminate on the basis of race, religion, age, gender or gender identity, disability, ancestry, marital or familial status, affectional or sexual orientation, military eligibility, veteran status, educational level, financial status or any other discriminatory reason in any of its activities or operations. These activities include, but are not limited to, membership status, the appointment to and termination from its Board of Trustees, hiring and firing of staff or contractors, selection of volunteers, selection of vendors, and providing of services. It is expected that all attendees abide by this statement as well.

We would like to acknowledge that the land on which we gather is the occupied territory of the Osage Nation, Missouria, and Illini Confederacy. We want to acknowledge many of the other tribes who have called the St. Louis region home including the Ponca, Kaw, Omaha, Quapaw, Cahokia, Kaskaskia, Tamaroa, Peorgia, Michigamea, Moingwena, Shawnee, Delaware, Sac, Fox, Apache, Miami, Winnebago, Otoe, Missouria, Mingo, Cherokee, Kickapoo, Potawatomi, Chickasaw, Onondaga, Pawnee, PadoWinnuca, and Oceti Sakowin. We pay our respects to elders both past and present and thank them for their stewardship.

To learn more about the history of the Indigenous People of St. Louis, go to shsmo.org/research/guides/native-american

Approved by The Oley Board of Trustees 10/14/22

Medical Information Medical Information

Disclaimers:

Consumers, we strongly advise you to discuss with your physician any medical information received from the Oley Foundation through conference presentations, informal discussions, the newsletter, etc before you make any changes in your health care

We do our best to offer a selection of foods that we hope will meet your dietary needs. However, please ensure you are reading labels and signage carefully and ask Oley staff if you are unsure of any ingredients. Please check with Oley staff regarding accommodations to food items.

Reminder: Please do not dispose of sharps in any of the hotel trash recepticals. We will have a container available for proper disposal at the Oley registration counter.

Closest Hospital

Barnes-Jewish

Phone Number: 314-747-3000

Address: One Barnes Jewish Hospital Plaza

Distance from Venue: 5 1 miles

Closest Urgent Care

Downtown Urgent Care

Phone Number: 314-436-9300

Address: 901 Olive Street

Distance from Venue: .09 miles

Closest Drug Store

Walgreens

Phone Number: 314-371-4286

Address: 4218 Lindell Blvd.

Distance from Venue: 4.3 miles

A note about service dogs:

Under the Americans with Disabilities Act (ADA), privately owned businesses that serve the public, such as restaurants, hotels, retail stores, taxi cabs, theaters, concert halls, and sports facilities, are prohibited from discriminating against individuals with disabilities The ADA requires these businesses to allow people with disabilities to bring their service animals onto business premises in whatever areas customers are generally allowed.

You may exclude any animal, including a service animal, from your facility when that animal’s behavior poses a direct threat to the health or safety of others For example, any service animal that displays vicious behavior towards other guests or customers may be excluded You may not make assumptions, however, about how a particular animal is likely to behave based on your past experience with other animals. Each situation must be considered individually.

Medical Support

Local hospitals will be notified that HPEN consumers are in town. Inform your homecare company in advance that you are traveling. If your homecare company is unable to assist you in the case of an infusion emergency during the conference, emergency infusion backup support will be available

For unexpected nutrition support needs:

Contact your homecare company first

If your homecare company cannot meet your needs, Coram/CVS specialty infusion services is available to assist with troubleshooting and to provide emergency nursing and pharmacy infusion services.

For direct assistance:

Contact an on-site Coram attendee (or Oley staff member) Michael Medwar, Patient Advocate

(508) 254-3638

Dacyl Spillane RD, CNSC, National Nutrition Manager

(310) 922-4537

Tara Maddi RD, Director of Strategy

(646) 761-2707

If the on-site attendees are not available, call: Lynn Koepke RD, CNSC, Coram Nutrition Liaison

(262) 606-3431

Identify yourself as an Oley Conference participant.

The Coram on-site team will coordinate with the Coram pharmacy to best address your needs.

Formula and supplies can be dispensed with appropriate physician's orders and confirmed method of payment.

Thank you to for this support

Special Event Information Special Event Information

Tuesday:

Market Research (Invitation Only)

Share your experience with tube feeding and/or IV nutrition to help improve the next generation of products.

Make sure your member information is up to date on oley.org. Based on your information, we may reach out to you about potential opportunities to give feedback, take surveys, or participate in focus groups.

For more information:

(518) 262-5079 or harrinc@amc.edu

Opportunities are available to qualified participants on a first-come, first-served basis.

Exhibit Hall & Exhibitors

The exhibit hall is open for members to connect with our industry partners and meet the people behind the supplies and devices they use every day, as well as learn about new updates in tube feeding and IV nutrition.

For your own knowledge and comfort, industry partners are not to:

Market products or services outside of exhibit hall

Conduct sales

Plan events for consumers

Unless attendees are already using their services

Dispense cash or gift cards

Conduct recruitment interviews or Recruit for future market research

If you witness any of these or other behaviors that make you uncomfortable, please inform Oley Staff or an Oley Ambassador

Ambassador Workshop

Sterling 6

Oley Ambassadors (OAs) will meet 6/27, 1:00-4:00. This time will be used to share updates, discuss the role of OAs at the conference, and other workshop activities.

For more information email mary.wootten@oley.org.

First Time Attendee Orientation

Sterling 6

We invite all first timers to attend a brief orientation to learn more about what to expect at this meeting and enjoy networking with Oley staff, Trustees, Ambassadors, and others attending for the first time. This is an opportunity for you to relax, ask questions, exchange ideas, and discuss experiences in an informal setting

Gateway to the Future Welcome Reception

Gateway East

Let's go back in time to 1983 when Oley was first getting started and Madonna and Springsteen were topping the charts!

Break out your legwarmers and get your hairspray ready because there will be a small prize for Best Dressed!

We'll present HPEN awards and kick off the next three days with some 80s jams and some light dinner fare including:

A variety of flatbread pizzas

Fresh vegetable platter

Chips & dip

Dessert items

Sponsored in part by:

Special Event Information Special Event Information

Wednesday:

Silent Auction & Ice Cream Social Regency ABC

For those of you who have attended the annual silent auction before, you will notice that we are mixing things up a bit!

This year, we will have a 50/50 raffle, and a mix of items to be bid on and raffled. Bids will go up by $1.00 increments and raffle tickets will be on sale for the following: 1 for $1, 3 for $2, 7 for $5, or an arm's length for $20.

There will also be a variety of frozen treats for you to enjoy while you browse, courtesy of:

Thursday:

Wine & Cheese Social

Gateway East

This will be an opportunity for adult attendees to network with one another and enjoy some adult time while kids and teens participate in structured chaperoned activities down the hall.

Jammin' Jammies

Sterling 9

Grab your pillows and blankets and hop into those jammies! Join us for a PJ party and a movie! This will be a chaperoned event for kids of all ages where we will be showing a PG movie.

Sponsored by:

Wear Your Pump Fashion Show

Prefunction Area

A fashion show for HEN and HPN patients living their best life on the go! Demonstrate (and educate us!) on how you wear your pump and take it wherever you go! Show us how you have adapted your nutrition delivery to fit your lifestyle! Show off adaptive clothing or just your favorite outfits!

Open to consumers & caregivers of all ages

It's not to late to register!

Categories:

Work - Beach - School - On the Go - Most Creative

1st Place in al cash prize courtesy of

Teen Talk

Sterling 8

Chill time to chat, do yoga, make art, listen to music, and unwind at the end of the day. OA Kelly Baker will be hosting an in-person support group and activity for teens.

Karaoke

Gateway East

Warm up those vocal cords! After the kids go to bed, we'll be singing our hearts out with the help of a professional karaoke DJ!

Special Event Information Special Event Information

Friday:

Walk & Roll-a-Thon

Meet at Regency Coatroom

Walk with us around the Arch in St. Louis! Or for those joining us virtually, walk wherever you are!

T-shirts will be provided at the conference to walkers with a suggested minimum donation of $30 Register and pick up your shirt Thursday or Friday at the conference registration area

Pledge sheet and more information at oley org/Walkathon2023 Funds raised help support all Oley programs

T-Shirts Sponsored by:

Picnic Lunch

Gateway East

After a stroll around the Arch, join us back on the terrace for a classic St. Louis lunch:

St. Louis style pizza

Toasted ravioli

Gooey butter cake

Frozen custard

Soft drinks

Fill out our evaluations!

Reminders will be sent on Brella

Sterling 8 & 9

Wednesday

8:30am-9:30am: Yoga & Music

9:30am-10:00am: Get to Know You Games

10:00am-12:00pm: Space Center & Aquarium Visit

12:00pm-12:30pm: Clean Up & Get Ready for Lunch

2:45pm-4:45pm: Get to Know You Games (5-11)

Thursday

8:30am-9:30am: Yoga & Music

Sponsored by: Sponsored by:

Empowerment Activity (12-17)

9:30am-10:00am: Get to Know You Games

10:00am-12:00pm: Rocket Building & Aquarium Visit

12:00pm-12:30pm: Clean Up & Get Ready for Lunch

2:45pm-4:45pm: Bricks 4 Kidz Lego Adventure

Friday

8:30am-11:15am: Games & Crafts

Reminder:

This is not child care. While these activities will be chaperoned by volunteers and facilitators, parents need to be available and easy to reach in case of emergency. We cannot change diapers, hook up, unhook, or administer any medical care.

Permission for attendance in Kidz Klub included in child's registration

**Child must be age 5+ to participate in Kidz Klub

Schedule Schedule

Tuesday 6/27

12:00pm-4:30pm Regency Coatroom Early Registration

8:00am-7:00pm Sterling 1, 3, 5 Market Research (Invitation Only)

1:00pm-4:00pm Sterling 6 Oley Ambassador Workshop (OAs Only)

4:00pm-4:15pm Sterling 6 Volunteer Orientation

4:15pm-6:15pm Dinner on your own

6:15pm-7:00pm Sterling 6 First Time Attendee Workshop

7:00pm-9:30pm Regency ABC

Gateway to the Future: 80s Themed Welcome Reception Sponsored in part by: Zealand

Schedule Schedule

9:00am-9:40am Regency ABC Keynote: Help Along the Way: Celebrating Oley’s 40 Year History

Joan Bishop, Oley Executive Director Emeritus Dr Lyn Howard, MB, FRCP, FACP, Oley Co-Founder

9:40am-9:50am Regency ABC Partner Recognition Oley Staff Industry Partners Award Winners

9:50am-10:30am

Regency ABC

Advocacy, Education, Community, Innovation: Four Pillars for a Strong Future

Maisy Cyr, MSW, Oley Manager of Education & Innovation

10:30am-10:45am Break (exit into prefunction area to close airwall)

10:45am-11:30am (PN)

Regency AB

10:45am-11:30am (EN)

Regency C

11:30am-12:15pm (PN)

Regency AB

11:30am-12:15pm (EN)

Regency C

The Patient's Voice in Vascular Access: Device Choices for Today and Beyond Consumer Panel

Choosing Wisely: Feeding Tube Selection Basics and Complication Prevention Strategies

Am I at Risk?

Recognizing Common Nutrient Deficiencies

A Look at ASPEN's New Clinical Recommendations for Blenderized Tube Feeding for Pediatrics and Adults

Cynthia Reddick, RD, CNSC Sponsored by: Amsino

Jodi Wolff, MS, RD, LD, FAND, FAACPDM

Lisa Epp, RDN, LD, CNSC, FASPEN

Sponsored by: Coram/CVS

Wednesday cont.

2:45pm-4:45pm Sterling 6

Schedule Schedule

SBS Specific General Session

David Mercer, MD, PhD, FRSCS, FACS

The Role, Availability and Future of GLP2 Therapy for SBS

Sukanya Subramanian, MD

Sponsored by: Zealand

2:45pm-4:45pm Regency ABC

Roundtable Sessions

During these sessions, participants will have the opportunity to spend 30 minutes at the table of their choosing. After 30 minutes, they will rotate to another table. There will be four rotations.

A Healing Journey Through Kintsugi: A Craft Activity

Bettemarie Bond, Oley Ambassador

Microbiology & Glowing Aseptic Technique (PN)

Crystal Killian, Oley Ambassador

Walking the Line: Tips for Dual Therapy (EN/PN)

Amy Braglia-Tarpey, MS, RD, CNSC

Customizing PN Infusion to Fit Your Life

Reid Nishikawa, PharmD, FASPEN,FCSHP

ENFit Connectors (EN)

Beth Lyman, MSN, RN, CNSC, FASPEN, FAAN

Bolus Feeding (EN)

Vicki Emch, MS, RD

Gravity Feeding (EN)

Katherine Bennett, RD, MPH, CLE

EN Pump Feeding (EN)

Tracey Giambertone, MS, RDN, LDN, CNSC

Venting and Draining (EN)

Line Locks

Jocelyn Hill, MN, RN, OCN, CVAA(c), VA-BC™

Sibling Social Session

Ryan Yoo, HPEN sibling

Travel Tips: Go Where You Want to Go

Katie Marschilok, Oley Member

PN Behind the Scenes

Jessica Pitt, PharmD, MBA

An Introductory Conversation to Mental Health

Aly Becker, MA, t-LMHC, NCC

Preventing Caregiver Burnout

Alaina McCormick, Jayme Scali, & Gsby Luna

Nutrition Patient Liaison Team at Optum Infusion & PN Caregivers

Button vs Dangler (EN)

Cara Larimer, RD, CNSC

Tube Feeding Troubleshooting (EN)

Cynthia Reddick, RD, CNSC

Assistive & Mobility Devices (Dual)

Anne Brettschneider, RD Sterling

Lisa Epp, RDN, LD, CNSC, FASPEN

Long Trail Hike

Al Mackay, Oley Member

Thursday 6/29

7:30am-8:30am Regency DEF Breakfast & Exhibit Hall Open

8:00am-4:45pm Regency Coatroom Register for Walk & Roll-a-Thon

8:30am-8:45am Regency ABC Opening Remarks Oley Staff & Board

8:45am-9:30am (General) Regency ABC Transitions Throughout Life Sivan Kinberg, MD

9:30am-10:15am (General) Regency ABC

An Empowered Healthcare Experience: The Importance of Mental Health Support in Optimizing Medical Outcomes Aly Becker, MA, t-LMHC, NCC

10:15am-10:30am Regency ABC In Loving Memory Ceremony

10:30am-10:45am Break (exit into prefunction area to close airwall)

10:45am-11:30am (PN) Regency AB Remote Patient Monitoring in Intestinal Failure Stephanie Oliveira, MD, CNSC

10:45am-11:30am (EN) Regency C

Am I at Risk? Recognizing Common Nutrient Deficiencies

Jodi Wolff, MS, RD, LD, FAND, FAACPDM

11:30am-12:15pm (PN) Regency AB Long Term Vascular Access Kevin Baskin, MD 11:30am-12:15pm (EN) Regency C Skin: Show Me How to Keep It Intact Carolyn Crumley, DNP, RN, ACNS-BC, CWOCN 12:15pm-2:45pm

Schedule Schedule

Updates at oley.org and on conference app Updates at oley.org and on conference app

Thursday 6/29

2:45pm-3:45pm Breakout Sessions

Sterling 1 Finishing Kintsugi Craft Activity

Sterling 2 The Impact on Family and Promoting Resiliency

Bettemarie Bond, Oley Ambassador

Shirley Huang, MD

Sterling 3 Running TPN infusions During the Daytime: What You Need to Know Hassan Dashti, PhD, RD

Sterling 4

A Practical Discussion With a Healthcare Provider and a Pediatric Caregiver on the Diagnosis and Management of SBS

Sterling 5 Enhancing Quality of Life in the Intestinal Failure Patient

Dr Valeria Cohran & Meagan G , Caregiver Sponsored by: Takeda

Marion Winkler, PhD, RD, LDN, CNSC (video) Maria Karimbakas, RD, CNSC Sponsored by: VectivBio

Sterling 6 HPN Research Prize Recipients

3:45pm-4:00pm Break

Rebecca Brown, RDN, CNSC, Jamie Haselhorst, RDN, LDN, CNSC Amy Cole

Thomas Hirsch, MD

4:00pm-5:00pm Regency ABC Town Hall Meeting (Open to all attendees)

5:00pm-7:30pm Dinner on your own

7:30pm-11:00pm Gateway East Wine & Cheese Social

7:30pm-9:00pm

Sterling 8 Teen Talk: In-Person Teen Support Group & Activities

7:30pm-9:00pm Sterling 9

Jammin Jammies!

Schedule Schedule

Friday 6/30 Note: Sessions start later today

8:30am-9:30am Regency DEF Breakfast

9:00am-11:30am Regency Coatroom Register for Walk & Roll-a-Thon

9:30am-9:45am Regency ABC Closing Remarks Oley Staff & Board

9:45am-10:30am (General) Regency ABC

10:30am-11:15am (General) Regency ABC

11:15am-11:30am

How a Three Pronged Approach to Innovation Can Enhance a Patient Experience Chaitenya Razdan, CEO of Care + Wear

Voices United: Creating Meaningful Change Through National Advocacy Initiatives

Beth Gore, PhD, Executive Director of Oley

Regency Coatroom Break & Register for Walk & Roll-a-Thon

11:30am-12:15pm Group Picture/Walk & Roll

12:15pm-2:30pm Gateway East "Picnic" Lunch

Oley 2023 Award Winners Oley 2023 Award Winners

Distinguished Clinician Award

Sponsored by: Baxter

Christina Ritchey, MS, RD, LD, CNSC, FASPEN

Unsung HPN Hero Award

Sponsored by: Nutrishare

Garrett Taira

Unsung HEN Hero Award

Sponsored by: Nestle Health Science

David Rowland

Rising Star Award

Sponsored by: Abbott

Damian Herrera

Caregiver Extraordinaire Award

Sponsored by: VectivBio

Jayme Scali

Thank you to our generous sponsors and congratulations to our 2023 Award Winners!

HPN Research Prize Winners HPN Research Prize Winners

SPONSORED BY: SPONSORED BY:

The HPN Research Prize was established in 2007 to encourage clinical studies focused on improving the quality of life for homePN consumers.

The 2023 prizes will be awarded to:

Rebecca Brown, RDN, CNSC

Jamie Haselhorst, RDN, CNSC

Impact of a Multidisciplinary Nutritional Support Team on Quality Improvement for Patients Receiving Home Parenteral Nutrition

Amy Cole

Identifying Experiences Related to Accessing Central Venous Catheters (CVCs)/Central Lines for Treatment Infusions and Parenteral (IV) Nutrition (PN)

Thomas Hirsh, MD

4% Tetrasodium-EDTA and Catheter Complication Rates in a High-risk Population of Pediatric Intestinal Failure Patients

Papers will be presented as a breakout session offering Thursday, 2:45pm-3:45pm

ADVOCACY ADVOCACY

Sponsorships Sponsorships

EDUCATION EDUCATION

Many thanks to the following companies and individuals for their generous contributions.

Room Key Card

Nutrishare

Registration Bags

Baxter

Registration Bag Inserts

Baxter, Nestle Health Science, Real Food Blends

Emergency Medical Support

Coram / CVS Specialty Infusion Services

Exhibit Hall Score Card

Avanos, Aveanna, Cardinal, Coram / CVS specialty infusion services, GBUK Enteral, Optum, Takeda

Badge Holders & Lanyards

Nutrishare

HPN Research Prize

Nutrishare

Distinguished Clinician Award:

Baxter

Caregiver Extraordinaire Award:

VectivBio

Unsung HPN Hero Award:

Nutrishare

Unsung HEN Hero Award:

Nestle Health Science

Rising Star Award

Abbott

Session Sponsors

Amsino, Coram/CVS specialty infusion services, Takeda, VectivBio, Zealand

Conference App

Takeda

Commemorative T-shirts

Nutrishare

Jammin Jammies

Abbott

Kidz Klub Yoga

Kate Farms

Ice Cream Social

Coram / CVS specialty infusion services

Walk & Roll-a-Thon Shirts

Baxter

Travel Scholarships Travel Scholarships

Many thanks to the following individuals, organizations and corporate sponsors for their generous support of scholarships for consumer attendees. Our members have shared that the most significant part of attending our conference is connecting with other people like them, so thank you for making those connections possible.

The Witt Family

Frona Brown, in Memory of Ester Adler Brown

Soleo Health

Nutrishare

Coram/CVS

Zealand

SBS Cures

L&B Worldwide

Amsino

Color of Crohn's & Chronic Illness

Jarol Boan

If you are interested in sponsoring an attendee in the form of a travel scholarship, head to the website below or scan the QR code.

Meeting Space Map Meeting Space Map

Eighteenth Floor

Gateway East

Welcome Reception

Wine & Cheese Social