2014 Oley Conference   (Conference Registration Packet PDF)


Renaissance Orlando at SeaWorld

Orlando, Florida

June 23-27, 2014



Registration—Free for Consumers/Families. Minimal fee for professionals/
 Registrants are responsible for their own hotel and transportation arrangements. 

Main Sessions & Breakout Sessions—Learning Opportunities Abound!
Presentations are coordinated to boost your understanding of the therapies that sustain you or your loved one. Topics covered formally on Tuesday include: The New Treatment for Short Bowel Syndrome, Staying Connected… as Enteral Tubes Roll Out, and Bacterial Overgrowth. Topics addressed on Wednesday include: Why Advocating for Yourself and/or Your Child Is Important, Growing New Bowel: Future Cure for Short Bowel Syndrome and Trends in Managing Intestinal Failure.

Tube Feeding Workshop
A must for tube feeders. You’ll learn about:
Keeping Complication to a Minimum, Formula and Medication Compatibility, More on New Connectors, Formula Options and Tube Choices, and More on Blenderized Diet.  

Ambassador Workshop/Volunteer Info Session
Planned for “official” Oley volunteers, but open to everyone with an interest in serving Oley, whether through outreach, social networking, graphic design, etc. Learn more about how to share your time and talents to advance the Oley mission. For more information contact Lisa at metzgel@mail.amc.edu or (800) 776-OLEY.

Child Care/Youth Activities/Jammin Jammies
Complimentary child care will be available Tuesday and Wednesday during the educational sessions. Chaperoned activities are planned for children ages 7+ on Tuesday and Wednesday afternoons, as well as a pajama party on Wednesday evening that is always a hit! Children/youth must be registered online by June 18 to participate in these activities. If you don’t have access to the Internet call (800) 776-OLEY to register your child/youth.

Walk-A-Thon Raises Funds, Awareness
Join us for a short walk. Forms to gather sponsors for this event and help raise awareness (click here)  or call (800) 776-OLEY.

No-Host Farewell Breakfast
We’ll gather in the Trade Winds Restaurant, order off the menu, exchange parting wishes, and enjoy being surrounded by Oley attendees one last time before leaving for home. To be included in this group reservation please indicate the number of people in your party.

Market Research
Share your experience with tube and/or IV feeding to help improve the next generation of products—and get compensated for your time! Indicate your interest on the registration form. Opportunities are limited and available to qualified participants on a first-come, first-served basis.

Conference Headquarters & Housing—
Reserve Your Room Now! They Will Sell Out.
Renaissance Orlando at SeaWorld

For reservations: (800) 266-9432, or (407) 351-5555

The rate of $135/night for single/double is open through June 2 and available for three days pre and post conference. Note: to secure this rate, use the customized link, or call and mention you are with the Oley Foundation Annual Meeting. (The toll free number is for booking at several different properties so don’t be surprised if they mention multiple hotel names.) Book early, we’ve sold out two years in a row.

Shipping HomePEN Supplies
Separate items that
need refrigeration and mark these boxes accordingly (hotel will store in walk-in cooler). All deliveries should be labeled as shown below. Ensure weekday delivery. Hotel staff will connect you with your supplies shortly after you check in.

            _____Your Name________, Guest
            Hold for Arrival on 6/___/14
            c/o Renaissance Orlando at SeaWorld
            6677 Sea Harbor Dr.
            Orlando, FL 32821-1225
            Re: Personal Medical Supplies, Oley Conference
             Needs Refrigeration (if applicable)

Medical Support—Keeping You Safe!
The local hospitals will be alerted. In addition, the Tampa, Florida, branch of Coram Specialty Infusion Services will provide emergency infusion support (if you forget something, have a bag break, etc.) and telephonic nursing/pharmacy support during the conference.

Why Should I Attend?

Proven Benefits to Patients in Contact with Oley*

  • Lower incidence of catheter-related sepsis.
  • Reduced reactive depression.
  • Significantly improved quality of life.

More Reasons ...

  • Learn to communicate your health care and emotional needs with more self-assurance.
  • Meet others on home tube and/or IV feeding.
  • Clinicians—learn and become better resources.

Plus! Oley Provides a “Safe Harbor”

  • Local emergency room information will be identified.
  • Nursing/pharmacy backup support has been arranged.
  • Hotel is aware of your supplies and shipping needs.
  • Rooms have refrigerators.

* Home Parenteral Nutrition: Does Affiliation with a National Support and Education Organization Affect Outcomes? Smith, et. al., JPEN 2002;26(3):159-163.


Monday, June 23

1:00 pm – 5:00 pm         Early Registration
1:00 pm – 6:00 pm         Ambassador Workshop/Volunteer Info Session
6:00 pm – 7:00 pm         First-Time Conference Attendee Orientation
7:00 pm – 9:00 pm         Welcome Reception/Awards Ceremony/Talent Show!

Tuesday, June 24

8:00 am – 4:30 pm         Registration/Information
8:00 am – 9:00 am         Exhibits
9:00 am – 12:00 pm       Main Session
12:00 pm – 2:00 pm       Exhibits
2:15 pm – 4:30 pm         Tube Feeding Workshop
2:15 pm – 3:15 pm & 3:30 pm – 4:30 pm
Breakout Sessions (attend two groups, see partial list below*)
7:30 pm – 9:00 pm         Oley Silent Auction

Wednesday, June 25

8:00 am – 4:30 pm         Registration/Information
8:00 am – 9:00 am         Exhibits
9:00 am – 11:45 am       Main Session
11:45 am – 12:00 pm     In Loving Memory
12:00 pm – 2:00 pm       Exhibits Raffle Day
2:15 pm – 3:15 pm & 3:30 pm – 4:30 pm
Breakout Sessions (attend two groups, see partial list below*)
8:00 pm – 10:00 pm       Jammin’ Jammies

Thursday, June 26

11:00 am – 5:00 pm       Oley Walk-A-Thon/Picnic 

Friday, June 27

10:00 am – 12:00 pm     No-Host Farewell Breakfast

* Breakout Session Topics
...will include, but are not limited to the following. Stay tuned for updates.

Navigating Catheter Complications
Nutrition Jeopardy
Let’s Talk About Catheter Locks
Me Stressed? Who’s Running Whom?
Managing Pediatric Short Bowel Syndrome
What’s in Your HPN Bag?
Is Gattex for You?
Drug Shortages and Your HPN Bag
Communicating with Clinicians for Best Outcome
Addressing Leaky G or J Tubes
Skin/Wound Care
Arranging the Best IEPs
Food Allergies and Sensitivities
Diet, Fluids and Conventional Medicine
Practical Approach to Managing Diarrhea

Combining HPN and HEN Therapies


Flying: Orlando International Airport (MCO) is 13 miles from the Renaissance hotel. Mears Shuttle Service costs $19 one way, $30 roundtrip (800-759-5219, www.mearstransportation.com). Details on how the shuttle service works and a $4 coupon off a roundtrip fare are available from their Web site; click on the “Book Orlando Airport Shuttles” icon, then enter your booking information and priority code: 471678201. No internet? Call (800) 776-OLEY for a copy of the coupon and buy your ticket when you arrive at the airport. Taxi fare is estimated to be $40 one way.


Come early or stay longer to explore Orlando. The I-Ride Trolley stops just outside the Renaissance hotel and runs daily 8:00 a.m. to 10:30 p.m. to major attractions, shopping, and dining. For rates, map, and other details go to www.iridetrolley.com or call (407) 248-9590.


Travel Grants for First-Time Conference Attendees! 

Thanks to generous donors who believe the conference is extremely beneficial, there are several $500 travel scholarships available for consumers who will be attending the Oley annual conference for the first time. 

Applicants should not be receiving any other financial assistance from homecare companies, etc. for travel and/or lodging expenses related to attending the conference.

Qualified conference attendees should write two paragraphs describing how they believe attending the conference will affect their life and submit them to harrinc@mail.amc.edu or The Oley Foundation, 43 New Scotland Ave., MC-28, Albany Medical Center, Albany, NY 12208. The ideal candidate will also describe their plans to share information learned at the conference with consumers and/or clinicians back home. Applicants will be notified by May 16. Travel must be completed and receipts received by Oley before reimbursement can be made. 


Other Ideas to Help with Travel

Some of your meals are covered at the conference!
In an effort to keep the conference affordable, generous supporters have underwritten some of the meals during the conference.

Hope to See You There!

Conference Coordinator: Joan Bishop
Conference Co-Chairs: Paula Johns, RN, CNSN; Bob & Mary Smithers




2013 Annual Oley Consumer/Clinician Conference

Record Attendance at Oley Conference!

We welcomed 529 people to the 28th Annual Oley Consumer/Clinician Conference in Hyannis, Massachusetts, in June. It was record-breaking attendance! Consumers came from near and far to hear experts in the field of nutrition support speak, to meet one another, and to enjoy the beauty of Cape Cod. The Cape Cod Times covered the event with the apt headline, “Feeding Body and Mind.”

  • Miranda and Dave came with their toddler all the way from Australia, while Carolyn joined us from England, Marek from Poland, and Lilac from Israel. Many attendees hailed from Massachusetts and the East Coast, but consumers also traveled from California, Louisiana, and Michigan. Lunches, the picnic, the silent auction, and meeting in the lobby or by the pool were great opportunities for attendees to meet one another and talk about life on home IV and/or tube feeding.

  • There were more than 150 new attendees—people who had never been to an Oley conference before—with us. We’ve invited several to write about their experiences (and if you were a new attendee and we missed you, please tell us about your first conference! Send to Lisa at metzgel@mail.amc.edu.)

  • The children were amazing—all 87 of them! While some attended sessions with their parents, dozens joined Oley volunteers in child care and the youth activity. Connections were strong!

  • Main session faculty included Stanley Dudrick, MD, FACS, FACN, FASPEN, one of the “fathers” of parenteral nutrition, who discussed the history of the therapy, and the challenges—and resistance—researchers face as they try to develop new solutions to medical problems; Antonio Morabito, MD, FRCS, FICS, joined us from the UK to discuss non-transplant surgery in patients with short bowel syndrome; Khalil Bitar, PhD, AGAF, spoke to us from his office in North Carolina about new developments with engineering intestines in the lab. Mary Baker, PharmD, MBA, updated us on drug shortages; Alyce Newton, MS, RD, CNSC, LDN, discussed alternative lipid solutions (for PN); Christopher Duggan, MD, MPH, addressed options for treating short bowel; and Oley President Mary Patnode, MS Ed, discussed the need for patients to self-advocate.

  • Many knowledgeable clinicians led breakout sessions, the choices in the afternoons were plentiful and varied—topics ranged from a tube-feeding jam session, to swimming/bathing with a catheter, to catheter care, nutrition, Hirschsprung’s disease, clinical trials, family dynamics, caregiver respite, interpreting lab results, and dating. Look for articles on several of these topics in upcoming issues of the newsletter.

  • Attendees also learned about the latest products services available from the 38 exhibitors, and helped raised $4100 at the silent auction. We offer many thanks to everyone who participated and made this conference a success. In your words…

“Great conference!”
“It is always so good to see everyone.”
“Thank you for the education, love and new friends.”
“I felt wonderfully supported by [the faculty]. They demonstrated an openness and individualized approach to the unique problems we were encountering.”
“The program was extremely informative.”
“I feel like we are one big family.”
“I truly believe it has changed the path of my healing.”
“It is such a gift to be able to talk to some of the top researchers in the world, and be treated with so much respect and compassion.”
“I learned so much. (I didn’t know as much as I thought I did!)“
“It was such a wonderful experience for our family, especially [our son on HPN]—he had the time of his life!”


2013 Conference Program

Kudos to the 2013 Oley Awards and Scholarship winners

Conference DVD's Available

Enjoy photos from the 2013 Annual Conference
 view album

Thank You for Supporting the 2013 Oley Conference: We couldn’t do it without you!

Plan Ahead for Smooth Airline Travel

What people say about the conference (testimonials / stories)

2012 Annual Conference

27th Annual Oley Consumer/Clinician Conference Highlights

Kudos to the 2012 Award, Scholarship Winners!

Thank You for Supporting the 2012 Oley Consumer/Conference in Redondo Beach, CA!

2012 Conference Program

Evaluate the 2012 Oley Conference

Enjoy photo's from the 2012 Oley Conference 

What people say about the conference (testimonials / stories)

Past Conference Highlights

26th Annual Conference Highlights - 2011

25th Annual Conference Highlights - 2010

24th Annual Conference Highlights - 2009

23rd Annual Conference Highlights - 2008                    

22nd Annual Conference Highlights - 2007                                                                                                                                                      

21st Annual Conference Highlights - 2006                    

20th Annual Conference Highlights - 2005

19th Annual Conference Highlights - 2004

18th Annual Conference Highlights - 2003

Inspirational Conference Stories

Updated:  March 26, 2014