Cape Codder Resort & Spa Hyannis, MA

Special thanks to Hospira for underwriting this conference program book

President’s Welcome

Dear Oley Friends, During the conference, I would like to ask you to do two things. First, look me up and tell me what you like best about the Oley Foundation. Second, say hello to someone you don’t know and ask them how they are connected to Oley. One of the best things about the Oley Conference is what we learn from each other. Our speakers are excellent. The program has been thoughtfully planned to have some- thing of interest for everyone, but all the information offered is only a starting point. Ask questions. Share your experience. Learn about someone or something new. The doctors, dietitians and other clinicians are here because they actually want to spend time with HPEN consumers and their families. Oley’s corporate partners are here to tell you about products and services that could make a major difference in your life. Long-term consumers who have “been there and done that,” are here to share things they have learned about managing their therapy more effectively and living their lives as fully as possible. If this is your first Oley Conference, please don’t be shy! Say “Hi” to everyone and ask as many questions as you can think of. Do me a favor and help me to learn as much about Oley as possible. I had been a tube feeder for only 18 months when I attended my first Oley Conference. I was amazed at how much I learned. I learned something new at each of the three conferences I have attended since then. I’m new to Oley leadership and I want to learn from you how we can serve our consumers, clinicians and corporate partners even better in the future. Enjoy the conference and ! I look forward to visiting with you. Sincerely,

Rick Davis HEN Consumer President, The Oley Foundation

1 Conference Co-Chair’s Welcome

Dear Oley Friends, Welcome to beautiful Cape Cod, where you will experience New England hospitality while feeling Safe and Sound on HPEN at the 22nd Annual Oley Conference. The salt air, ocean breeze, sandy beaches, and warm sun create an environment conducive to relaxation and learning. The Oley Conference program is rich with important information about day-to-day life on HPEN presented by expert health care professionals and shared by consumers just like you! In addition to the main presentations, small breakout sessions will feature the latest research and treatment advances. Be sure to introduce yourself and meet others, ask questions, and share stories. Networking with consumers, families and clinicians is one of the most valuable experiences of the conference! You will hear wonderful examples of how others have successfully navigated the challenges of living with HPEN sailing toward a meaningful and rich quality of life. Oley’s corporate partners will be in the exhibit hall to describe the many options avail- able in nutrition support services, equipment and supplies. Chaperoned youth activities are planned and the kids won’t want to miss Jammin’ Jammies! Complimentary child care will be available for younger children and babies. Don’t miss the 24th Annual Picnic following the 3rd annual Oley Walk-A-Thon in Hyannis Center and along the beautiful marinas. Support the Oley Foundation by attending the Silent Auction on Thursday evening where you’ll find exciting items awaiting your bid! During your free time, visit the wonderful attractions of Cape Cod, including shop- ping, restaurants, sand dunes and beaches. Be sure to wear your sun screen, as New England sunshine can be very strong especially at midday. We are pleased that you are participating in the Oley Foundation’s 22nd Annual Con- ference. We look forward to meeting you! Sincerely,

Marion Winkler, MS, RD, LDN, CNSD Michael Medwar Immediate Past-President of A.S.P.E.N. Oley Trustee Conference Co-Chair Conference Co-Chair

2 Who’s Who

Meeting Coordinator Joan Bishop

Conference Co-Chairs Michael Medwar; Marion Winkler, MS, RD, LDN, CNSD

Oley Board of Trustees President Rick Davis, Salt Lake City, UT Vice President Darlene Kelly, MD, Rochester, MN Treasurer Laura Ellis, PhD, , NY Secretary Michael Medwar, Attleboro, MA Medical & Research Director Lyn Howard, MB, FRCP, FACP Albany, NY

Trustees Jane Balint, MD, Columbus,OH Alan Buchman, MD, Chicago, IL Jane Golden, Watertown, CT Kishore Iyer, MD, New York, NY Jim Lacy, RN, Salt Lake City, UT Sheila Messina, MS, RN, San Jose, CA Doug Seidner, MD, Cleveland, OH

3 Oley Staff

Joan Bishop Executive Director [email protected] Joan has been with Oley since 1985 (nearly its inception). As Executive Director, Joan handles the multitude of tasks it takes to keep Oley running and growing, including budget planning, building relationships, fundraising, board development, and coordinat- ing the annual conference. She is dedicated to fulfilling the Foundation’s mission and welcomes your ideas, comments and criticisms. Cathy Harrington, MA Administrative Assistant [email protected] Cathy has been with Oley since 1998, and before that was the Secretary for Albany Medical Center’s Division of Clinical Nutrition. She has experience in patient care, extensive knowledge of the homePEN arena and a strong desire to support Foundation activities. Cathy manages the member database, answers most of your calls, and meets the needs of the Foundation office. She is the glue that holds us together!

Roslyn Scheib Dahl Director, Communications & Development [email protected] Roslyn has served Oley members for twelve years. She is responsible for producing Oley publications and managing Oley’s Web page and information clearinghouse. She works closely with other staff members and volunteers to raise funds for the Foundation and to promote its services to an ever-growing audience. Call on her to research your questions or to share ideas for Oley publications or promotions.

Kate Swensen Outreach Coordinator [email protected] Kate is Oley’s Outreach Coordinator. She is studying biological sciences at SUNY Albany. She has first-hand experience with HPN as one of her family members has been HPN- dependent for almost 20 years. Kate’s charming, personable nature and experience in the daily impact of living with HPN are a great asset for the Oley team. She is eager to hear your input and ideas.

Lisa Metzger Editor, LifelineLetter [email protected] Lisa is the new Editor of the LifelineLetter. She brings with her more than 20 years experi- ence in writing and editing. Lisa has been a member of Oley for many years following her two stints on HPN due to hyperemesis gravidarum. She is eager to hear your suggestions for articles in the LifelineLetter. Please join us in welcoming her on staff.

4 General Information

Registration and Conference Information Information about all aspects of the conference is available at the registration desk. The desk will be staffed Wednesday from 6:00 p.m. to 7:00 p.m.(at the Welcome Reception), Thursday from 8:00 a.m. to 4:30 p.m., and Friday from 9:15 a.m. to 4:30 p.m. All conference activities will be held at the Cape Codder except for the youth activities, walk-a-thon and picnic. A map of the meeting rooms is on the back of this program.

Medical Support/Emergency Services For an HPN/HEN related emergency: 1) Call your physician to discuss the proper treatment plan. 2) If your physician is not available, try calling Dr. Lyn Howard for her recommendation (she is staying at the Cape Codder from Wednesday to Saturday). 3) Seek emergency care at Cape Cod Hospital (27 Park Street, Hyannis / 508-771-1800). Telephonic support/backup for (emergency) nursing and pharmacy infusion during the conference has been graciously offered by Coram Healthcare. Call the Hopkinton Coram branch (800-422-7312) and identify yourself as an Oley Conference participant. They will need contact information for your physician in order to obtain orders. They can dispense prescribed fluids, additives, and supplies with a physician’s order. They can also help troubleshoot a consumer’s pump, provided it is one they are familiar with.

Child Care Complimentary child care is available in the Presidential Suite/ Room 500. Thursday from 8:30 a.m. to noon and 2:00 p.m. to 4:30 p.m., and Friday from 9:15 a.m. to noon and 2:00 p.m. to 4:30 p.m. Parents are responsible for their children during the lunch break. Signed permission statements are required and are available at the registration desk. Thursday morning: Children who have been nominated for awards should be sure to attend the Awards Ceremony. Each child will be celebrated and have their picture taken.

Welcome Reception Join us Wednesday at 7:00 p.m. in V.J.’s Grill. Meet Oley Trustees and staff and other consumers. The reception will honor Oley’s Co-Founder and Medical & Research Direc- tor, Dr. Lyn Howard, who is retiring this year from Albany Medical Center.

Conference Orientation A must attend for first-time Oley Conference goers. Meet Oley staff Thursday at 8:30 a.m. in Emerald Room to learn how to make the most of your first conference experience.

Oley Awards Presentation

5 General Info. (con’t)

Join us in celebrating these outstanding individuals Thursday morning at 9:00 a.m in Emerald Room. To read about the winners, see pages 11 to 16. Children who have been nominated for an award should attend the presentation with their parents.

Main Sessions Thursday: Fishing for Solutions We’ll identify resources that can help you find solutions to medical issues. You’ll walk away with a better understanding of intestinal rehabilitation programs and some insight as to what you should expect from each member of your medical team. You’ll also hear from a 33-year HPN veteran about his techniques for navigating the waters. Friday: The Dark Side of Successful Therapies Tube and IV feedings are life-saving therapies, but there can be significant hurdles to overcome and serious complications. We’ll explore the most recent research to reduce TPN-related liver disease and catheter-related bloodstream infections. We’ll also learn more about recognizing and treating depression that can be connected with a chronic illness or long-term therapy.

Exhibit Hall Come learn more about parenteral and enteral products and services Thursday and Friday in the JFK Ballroom. The Grand Opening is Thursday at noon. Friday is Raffle Day. Visit the exhibits and qualify to win raffle prizes. Must be present in the hall to win! Compli- mentary lunch will be available both days, sponsored on Friday by Coram, Inc.

Breakout Sessions Information about the breakout sessions will be in your registration packet. A map of the meeting rooms is on the back of this program. Signs will be posted near each room.

Your Choice! Breakout Sessions or Enteral Workshop Friday afternoon it’s your choice: join in the enteral workshop or participate in the breakout sessions. The workshop will cover tubes, skin care, etc. Or join a small group discussion on one of the breakout session topics (see page 9 for topics and room assign- ments).

Jammin’ Jammies! Sponsored by Ross Products, a supervised evening of fun for Oley kids and siblings will be held Friday evening in the Crystal Room, 7 to 9:30 p.m. (ages 7-14), and 7 to 11:00 p.m. (ages 15+). Sign-up and permission slips are required, and HPEN youth who need to be infusing must come already hooked-up. Wear modest PJ’s and don’t forget your pillow!

6 General Info. (con’t)

Youth Activity Sponsored both days by NutriThrive, the youth activity is designed for kids ages 7 to 15. Signed permission statements are required and available at the registration desk. A shuttle/bus will pick up and return kids at the main entrance of the hotel; parents should be available in the lobby to meet the shuttle/bus when it returns (5:00 Thursday / 4:30 Friday). If your child tires easily or has limited mobility, please notify Oley staff at your earliest convenience, so we can plan accordingly. Thursday from 1:00 to 5:00 p.m., Oley chaperones and children will explore the Wellfleet Bay Wildlife Sanctuary with a certified Teacher/Naturalist. On a Tidal Flat and Salt- Marsh walk kids will use dip nets and fish traps to discover fiddler crabs, shrimp, eels, and other marine organisms that inhabit the salt marsh. Next, they’ll look for snails, crabs, horseshoe crabs, shorebirds, and other marine creatures. Children should be prepared for the afternoon: An application of sunscreen, a hat, (water shoes if they have them), a change of clothes (they might get muddy) and a beverage to keep them hydrated will be necessary. Friday’s youth activity (2:00 to 4:30 p.m.) will take the children to one of the most elaborate miniature golf courses for a great game. Children should be prepared with an application of sunscreen, a hat, comfortable shoes and a beverage to keep them hydrated.

Oley Benefit Auction — An Entertainment Extravaganza! The fun begins Thursday at 7:30 p.m. when the bidding begins in the JFK Ballroom. Drop off donated items at the registration desk before Thursday afternoon. Visa, MasterCard and American Express will be accepted! Exhibits will be open at this time too.

Town Meeting Join us for a complimentary dinner Friday evening and discuss the future of the Oley Foundation. We’ll brainstorm ideas with Oley staff, trustees, and supporters. The recipi- ent of the Kyle R. Noble Scholarship will also be announced.

Oley Walk-A-Thon Join us at the Oley Walk-A-Thon, Saturday, 10:00–11:00 a.m. The walk ends at the Village Green where the picnic will be held. See page 10 for details.

The 24th Annual Oley Picnic The picnic will be held Saturday, from 11:00 a.m.to 4:00 p.m. on the Village Green, 1.5 miles from the Cape Codder. See page 10 for details.

Farewell Breakfast Join us Sunday from 9:00 to noon in V.J.’s Grill. See page 10 for details.

7 Wednesday & Thursday’s Program

Breakout Session I Wednesday Intestinal Transplantation: What’s Up? Barnstable 6:00 p.m. — 7:00 p.m. Early Registration/Information Have the Guts to Transition to Enteral? Crystal Room 7:00 p.m. — 9:00 p.m. Welcome Reception The Role of Probiotics ... V.J.’s Grill Sandwich See page 5 for details. Self-Monitoring: How & Why? Nantucket Reducing HPEN Complications Thursday V.J.’s Grill 8:00 a.m. — 4:30 p.m. Managing Your Ostomy... Registration/Information Crystal Room Complimentary continental breakfast avail- able. 3:30 p.m. — 4:30 p.m. 8:30 a.m. — 9:00 a.m. Breakout Session II Surgical Options for Reducing HPN Orientation for First-Time Attendees Emerald Room Dependency Barnstable 9:00 a.m. — 9:45 a.m. Welcome/Awards Ceremony Coping Skills You Can Live With Emerald Room Crystal Room Taking Charge of Your Care... 9:45 a.m. — 12:00 p.m. Main Session I: Fishing for Solutions Crystal Room Emerald Room Staying Hydrated... 12:00 p.m. — 2:00 p.m. Sandwich Grand Opening of the Exhibit Hall Pediatric Issues JFK Ballroom V.J.’s Grill Complimentary lunch will be available.

1:00 p.m. — 5:00 p.m. 7:30 p.m. — 9:00 p.m. Youth Activity Oley Benefit Auction See page 7 for details. JFK Ballroom

2:15 p.m. — 3:15 p.m.

8 Friday’s Program

9:15 a.m. — 4:30 p.m. Catheters, Bacteria and Infection... Registration/Information Sandwich Complimentary continental breakfast avail- able. Complementary Therapies Barnstable 9:30 a.m. — 9:45 a.m. In Loving Memory 3:30 p.m. — 4:30 p.m. Emerald Room Breakout Session II A tribute to beloved Oley members who have Mitochondrial Disorders... died in the past year. Sandwich See page 32 for details. Understanding Medicare Coverage 9:45 a.m. — 12:00 p.m. Crystal Room Main Session II: The Dark Side of Nutrition Support: From the Kitchen! Successful Therapies Emerald Room V.J.’s Grill Tackling Catheter Complications 12:00 p.m. — 2:00 p.m. Nauset Raffle Day in the Exhibit Hall JFK Ballroom Visit exhibits to enter contests. Must be present 5:30 p.m. — 8:00 p.m. to win. Complimentary lunch sponsored by Town Meeting Coram, Inc. Emerald Room See page 7 for details. 12:00 p.m. — 4:00 p.m. Teens Transitioning 7:00 p.m. — 9:00 p.m./11:00 p.m. Teen consumers meet in lobby at noon. Jammin’ Jammies Crystal Room 2:00 p.m. — 4:30 p.m. See page 7 for details. Youth Activity See page 7 for details.

2:15 p.m. — 4:30 p.m. Enteral Nutrition Workshop Emerald Room See page 6 for details.

2:15 p.m. — 3:15 p.m. Breakout Session I Managing Your Pain Effectively Nauset Reimbursement Options Crystal Room

9 Saturday & Sunday’s Events

Saturday, June 30

10:00 a.m. — 11:00 a.m. Oley Walk-A-Thon Start: Intersection of Sea Street Ext and Main Street/Finish: Village Green Join us for the third annual Oley Walk-A-Thon. Approximately two miles in length, the route should take most adults about an hour to walk at a comfortable pace. Or stand at the finish to cheer the walkers on. Turn in pledge sheets and get your t-shirts by Oley’s registration desk at the Cape Codder Resort and Spa on Friday, June 29 from 9:15 a.m. – 4:30 p.m. A second registration will take place in the Cape Codder lobby June 30 from 8:45-9:45 a.m. Transportation to the walk site will be available starting at 9:30 a.m. and the walk kicks off at 10:00, ending at the Oley picnic site on the Hyannis Village Green. A bus will be on-hand, in the parking lot behind the Village Green, to return people to the hotel throughout the day. Walkers should dress for the weather, and wear sunscreen, a hat and comfortable shoes or sneakers. There will be water stations along the route.

Noon — 4:00 p.m. The 24th Annual Oley Picnic Hyannis Village Green The picnic will be held on the Hyannis Village Green located 1.5 miles from the Cape Codder (see directions below). Transportation will be available from the Cape Codder or you can drive and park in the lot next door to the village green. Sign up at the Oley Registration. Relax and enjoy an assortment of picnic fare, great fellowship and much fun. As always, the event is FREE for all conference attendees, speakers, exhibitors, and their families. In addition to our regular picnic activities, Oley has sponsored admission to the JFK Museum (located on Main Street) from 9–5 on June 30. Visit the museum, on us, by signing in at the front desk as an Oley member. Entertainment is sponsored by Option Care, Inc. and transportation by Novartis Nutrition. Directions: From the Cape Codder, turn right out of main parking lot onto Route 132. Follow 132 until it ends at the airport rotary. Go halfway around the rotary and get off on Barnstable Road – you’ll see a Citizens Bank on your right. Go through one intersection (past a Taco Bell) and turn right onto Main Street. Hyannis Village Green is on the left hand side. There is some parking on Main Street and a lot next door to the village green with about 100 spaces. While at the JFK Museum, you may park in their lot behind the building, which is accessible by turning right after the Post Office. Sunday, July 1

9:00 a.m. — Noon Farewell Breakfast V.J.’s Grill Join fellow conference attendees Sunday morning for breakfast in V.J.’s Grill. The cost is $12 per person. Bring your camera and address book for this hug and photo fest.

10 2007 Awards Program

The Annual Oley Awards Program recognizes homePEN consumers and family members who exhibit courage and perseverance in overcoming the adversity of illness and are gener- ous in the effort of helping others. Winners are chosen from a pool of nominees by a panel of previous award winners, Oley board and committee members, and Oley staff (when there is a tie). We rely on YOU to nominate worthy candidates. There are many individuals who deserve this recognition. Please consider nominating these special people for next year’s program. Nomination forms are available in the January/February issue of the LifelineLetter, and online at www.oley. org (between February and April). Join Oley in celebrating their outstanding efforts Thursday, June 28, at 9:00 a.m. (im- mediately following the Welcome).

Awards To Be Presented This Year:

LifelineLetter Annual Award In honor of Nutrishare Inc., Oley Platinum Partner

Oley Foundation Child of the Year Award

Celebration of Life Award In honor of Coram, Inc., Oley Golden Medallion Partner

Lenore Heaphey Grassroots Education Award

Nan Couts Award for the Ultimate Volunteer Coordinated by Judy Peterson

11 Awards Program (con’t)

LifelineLetter Annual Award In Honor of Nutrishare, Inc., Platinum Partner

Barbara Klingler • Malabar, FL

This year the LifelineLetter Annual Award goes to Barbara Klinger. In November 2006, Barb marked twenty years on HPN. She commemorated the anniversary by planting two trees in her front yard. It was, she says, a celebration of life. Typical of Barb’s generosity in helping others, she recently flew over a thousand miles to assist a friend and fellow-consumer recover from a difficult illness. As an HPN consumer herself, during her visit Barb saw needs others could not anticipate. As well as helping to cook, clean, and care for pets, Barb helped organize her friend’s medical supplies and locate community resources. Barb is very involved with her church. She leads the CD/DVD duplication depart- ment and the couples’ ministry. Since 1999 she has coached the church Bible quiz team. The team has won the state championships for five years. Barb and her husband, Lee, have been married for twenty-four years. Barb notes that they are best friends. Embracing life and pursuing the things they enjoy, together Barb and Lee have visited forty-eight states. Barb routinely exhibits the qualities this award sets out to recognize: courage, per- severance, a positive attitude, and exceptional generosity. We are grateful to have her in our midst.

Nominees: Pam Belmonte Jim Cowan Roberta Gelle Malisa Matheny Lisa Miller Liz Tucker Jim Wittman The Woods Family

12 Awards Program (con’t)

Oley Foundation Child of the Year

Gypsy Rose Blancharde • Aurora, OH

Gypsy Rose Blancharde is twelve years old, yet one of her friends says she has the wisdom and compassion of someone much older. Multiple health issues don’t stop Gypsy from encouraging and uplifting others. Before Hurricane Katrina caused Gypsy and her mother to relocate, Gypsy would talk at a university in New Orleans on why people should help and love one another. At eight years old, Gypsy took the allowance she had been saving for a trip to Disney World and used it to buy food and blankets for those in need. When she and her mom ended up in need themselves, Gypsy’s mom says Gypsy never complained. Instead she would tell others that things are getting better and point out a beautiful flower, saying, “We didn’t see that yesterday; how lucky that we can see it today.” Just ten hours before Hurricane Katrina struck Louisiana, Gypsy and her mother were evacuated to a special needs camp in a safer part of Louisiana. Gypsy named their shelter Camp Bright Beginnings, and arranged for the evacuees to gather for stories, songs, and games. Thank you, Gypsy Rose, for sharing your smile and big heart with the Oley community!

Nominees: Ana Maria Bennett Colyn Woods

13 Awards Program (con’t)

Celebration of Life Award In Honor of Coram, Inc., Golden Donor

Colyn Woods • Hemet, CA

Colyn Woods, age eleven, has faced many challenges in his life, yet is seldom heard complaining. Though he faces pain and a lack of energy, he has set a goal to not let either slow him down or keep him from doing things that are important to him. Colyn is quoted as recently saying, “This backpack [with my IV pumps] is a part of me. It doesn’t stop me from doing things. If there is something I’m told I can’t do, I figure out how I can do it instead of accepting that I can’t.” Colyn has taken responsibility for his health care and learned how to handle his PN, fluids, nebulizers, and medications. He has recognized the importance of understanding his health issues and has made it a priority. He is also an active participant in such things as the Oley Conference, where he is a friend to so many. Colyn greets everyone, visits the exhibits, raises money for the walk-a-thon, and is a definite presence at the picnic. Colyn is noted for his smile, his sweetness, and his compassion, as well as his zeal for life. Congratulations, Colin!

Nominees: Rommel DeGracia Alicia Hoelle Barbara Klingler Kyle Noble Mark Reedy Christopher Tournier Jennifer Wright Don Young

14 Awards Program (con’t)

Lenore Heaphey Grassroots Education Award

Ben Hawkins • Cincinnati, OH

Ben Hawkins has been an Oley Regional Coordinator in the Cincinnati, Ohio, area for over fifteen years. Despite a relatively small turnout at those first gatherings, Ben and his mother persevered in organizing the outreach meetings. One of Ben’s friends likens him to an early union organizer, “standing on a cold and damp street corner handing out leaflets to people who had never heard of something called Oley. It was hard and often discouraging work.” As a regional coordinator, Ben takes his message about Oley to others in the hospital or at home. In a recent article in the Cincinnati Enquirer Ben is quoted as saying, “Oley took me from feeling totally alone to having a network of people I can talk to, and people I can help. Because of my condition, I have great compassion for others.” More recently Ben took on the volunteer position at Oley as coordinator of the equipment exchange program, which enables Ben to reach out nationally. As coordinator, Ben keeps a spreadsheet record of all the equipment anyone offers to donate—from durable goods to tubes and bags to formula—and looks for a match when someone contacts him with a need. Don’t hesitate to call him. He is very capable at his job, and it makes him happy to make a match. Thank you, Ben!

Nominees: Robbyn Kindle

15 Awards Program (con’t)

Nan Couts Award for the Ultimate Volunteer Coordinated by Judy Peterson, RN, MS

Marcia Boatwright, RN, CRNI • Minneapolis, MN

This year the Nan Couts Award for the Ultimate Volunteer goes to Marcia Boatwright. As a nurse, Marcia is very involved in patient care and goes out of her way to attend to the things HPEN consumers need. Marcia has been active at several Oley conferences, both regional and national. Her contributions have made the conferences better and more efficient, and her clinical support of attendees has been thorough and appropriate. Marcia is very knowledgeable and eager to share what she knows with others, both consumers and clinicians. She is dedicated to sharing information that will help each consumer. Marcia spends much of the conferences talking to consumers about their health issues. We are very pleased to present this award in recognition of Marcia’s willingness to give of herself in educating homePEN consumers, thereby empowering them and improving their quality of life. Marcia, thank you for going above and beyond in serving others.

Nominees: Alyce Newton, RD

16 Special Sponsorships

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

Medical Support: Flowers for Award Winners: Coram, Inc. EMD Serono

Conference Bags: Annual Picnic: Nutrishare, Inc. Entertainment - Option Care, Inc. Transportation - Novartis Nutrition Conference Program Books: General Picnic - Bobbie Groeber, in memory Hospira Worldwide of Bruce Groeber

Travel Scholarships for Consumers: Silent Auction: Anonymous; Jarol Boan, MD; Bruce Groeber A big “Thank You!” to all who donated, Memorial Fund; Critical Care Systems; Melissa brought and/or will purchase items!! Chaney Memorial Fund; Nutrishare, Inc. Oley Walk-A-Thon: General Conference Support: Apria; Ben & Jerry’s Ice Cream; British Beer; Patricia Brown, RN, CNSN, OCN; Kim Butler; Critical Care Systems; Coram, Inc.; Kimberly- Rick Davis; Marilyn Dolan; Mary Friel; Fruit of Clark; Nutrishare, Inc.; NutriThrive; Spanky’s the Earth; Linda & Colman Gulden; Stephanie Clams...and thank you to everyone who Harrison-Bishop; Portia & Wallace Hutton; walked or otherwise supported the effort!! Kate Letzelter; Joan & Ellias Medwar; Sheila Messina, RN; Andrea Quinn-Guidi; Marjorie Quinn; Charlie & Carol Scoville; Robert & Karyn Thomas

Jammin’ Jammies: Ross Products; Volunteer Organizers: Rose Hoelle and Patty Woods

Child Care: Critical Care Systems; Option Care, Inc.;

Youth Activity: NutriThrive (both days)

Lunch (Friday): Coram, Inc.

17 Exhibitors

Disorders (AGMD) 12 Roberts Dr Bedford, MA 01730 The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is a nonprofit international Applied Medical organization which serves as an education resource Technologies (AMT) concerning digestive motility diseases and disorders. It also provides support for patients as well as 15653 Neo Parkway family members and functions as an information Cleveland, OH 44128 base for members of the medical and scientific Applied Medical Technology, Inc., is a global communities. leading developer and manufacturer of enteral feeding devices, committed to the highest standards of quality and performance. AMT has grown into a model for the advancement of medical technology by embracing the needs of patients first, while maintaining a close working relationship with health care providers. Bard Access Systems 605 N 5600 W Salt Lake City, UT 84116 Bard Access Systems provides enteral feeding devices designed to meet the specific requirements and unique challenges of both adult and pediatric patients. The Gaudeere Genie™ System, the Bard® Burtton replacement gastrostomy tube, the Apria HealthCare* Wizard® replacement gastrostomy tube, the Bard® 26220 Enterprise Ct Tri-Funnel replacement gastrostomy tube and the Lake Forest, CA 92630 Ponsky™ Non-Balloon replacement gastrostomy With a broad range of infusion, enteral, respiratory tube were devleoped through years of clincial and clinical support services, Apria Healthcare is experience, working with leaders in the field. the single source for homecare across America. The company has over 350 branches serving 50 states. Let Apria healthcare make traveling with enteral, TPN, and oxygen comfortable and convenient. Visit Apria’s booth today or visit www. Apria.com. Calmoseptine, Inc 16602 Burke Ln Huntington Beach, CA 92647 Calmoseptine Ointment is a multipurpose moisture barrier that protects and helps heal skin irritations from moisture, such as urinary and

Association of * Indicates a company is a corporate donor GastrComplimentaryointest lunchinal will Mobe offeredtili int they exhibit hall, sponsored on Friday by Coram Inc.!

18

Exhibitors (con’t) fecal incontinence. Calmoseptine temporarily 337 Turnpike Rd relieves discomfort and itching. Free samples at Southborough, MA 01772 the company’s booth. New England Home Therapies, Inc is a - based company providing high quality innovative therapies to patients in their homes. The company is contracted with every major insurance company in the commonwealth. Its facilities are located in Massachusetts, New Hampshire, Maine and Coram, INC * . Services include TPN and enteral 1675 Broadway, Ste 900 nutrition management, high tech respiratory care Denver, CO 80202 and durable medical equipment. Coram provides the highest quality clinical care and personal support for HomePEN consumers, through its One-to-One program, consumer advocate (Coram Partner), and toll-free help line. Once again, Coram is proud to be a Golden Medallion partner of the Oley Foundation, helping Crohn’s & Colitis to fund educational and outreach efforts. Foundation 280 Hillside Ave Needham, MA 02494 The mission of the Crohn’s & Colitis Foundation of America is to cure and prevent Crohn’s disease and ulcerative colitis through research, and to improve Critical Care Systems (CCS)* the quality of life of children and adults affected 61 Spit Brook Rd by these digestive diseases through education and Nashua, NH 03060 support. Critical Care Systems (CCS) is a leading national specialty infusion company providing comprehensive clinical services to pediatric and adult populations through a national footprint of JCAHO accredited community-based branches. The company’s Specialty Nutrition Support Program is supported by a team of dietitians, EMD Serono, Inc* nurses, pharmacists, and reimbursement specialists 361 Geneva Ln who excel in parenteral nutrition, clinical support Cary, IL 60013 and customer service. Now available!... learn more about a treatment advance for short bowel syndrome patients. If you are or treat an SBS patient, you may be able to decrease dependence on parenteral nutrition. Educational and product-specific materials for healthcare providers and patients are available at Critical Homecare the Serono booth. Solutions / New England Home Therapies

19 Exhibitors (con’t)

(now available in 12 Fr size for pediatrics!) and the KIMBERLY-CLARK* MIC-KEY* Low-Profile Transgastric Jejunal Feeding Tube. The company is the maker of the first balloon gastrostomy feeding tube and is a leader in ongoing research, development and customer support. Hospira Worldwide, Inc* 275 North Field Dr Dept 97J, Bldg - H1 Lake Forest, IL 60045 Hospira, Inc. is a global specialty pharmaceutical and medication delivery company dedicated Mito Action to Advancing Wellness™ by developing, 14 Pembroke St manufacturing and marketing products that help Medford, MA 02155 improve the productivity, safety and efficacy of MitoAction is a nonprofit organization dedicated patient care. In February 2007, Hospira acquired to improving quality of life for patients and families Mayne Pharma Limited to become the world leader living with mitochondrial disease through support, in specialty generic injectable pharmaceuticals. education and advocacy.

InfuScience 1225 Tri-State Pkwy, Ste 510 Nestlé Nutrition* Gurnee, IL 60031-9163 3 Parkway North, Ste 500 InfuScience is the “Next Generation Comprehensive Infusion Provider.” The company is excited to be Deerfield, IL 60015 a part of the Oley meeting to share its exciting Nestlé Nutrition, part of the world’s largest food news. InfuScience excels in the areas of HPN, company, provides a comprehensive line of enteral enteral, antibiotic therapy along with other nutrition formulas to the health care community. infusion therapies in the home. Visit the company’s Markets served include hospital, home care and booth to learn about its commitment to “make a long term care sites. Nestlé Nutrition product difference.” offerings satisfy a wide range of demanding clinical nutrition needs with products that include oral supplements and tube feeding formulas in the form of whole-protein, elemental and special diets for both adults and pediatrics. Kimberly-Clark* 1400 Holcomb Bridge Rd Roswell, GA 30076 Kimberly-Clark develops, manufactures and markets the comprehensive line of MIC* Feeding Tubes, including the KIMBERLY-CLARK* MIC- KEY* Low-Profile Gastrostomy Feeding Tube

20 Exhibitors (con’t)

is to ensure quality care that fosters independence and empowers our patients and their families. Join us at the NutriThrive booth and help us shape the future of home nutrition care. Novartis Medical Nutrition* 1600 Utica Ave South #600 St. Louis Park, MN 55416 Novartis Medical Nutrition is dedicated to maintaining and improving the health and well- The Oley Foundation being of consumers and patients–at home or in 214 Hun Memorial, MC-28 health care delivery settings–by fulfilling their Albany Medical Center nutritional needs. In partnership with health care Albany, NY 12208 professionals, the company offers the highest Stop by the registration desk and introduce quality medical nutrition products and services yourself to the Oley staff — we’d love to meet that improve health and quality of life. you and find out how we can better serve your needs. You can also find out more about the programs offered by the Foundation, including our new Web page, toll-free consumer networking, information hotline, Regional Coordinator Nutrishare, Inc* network and the LifelineLetter. 10519 E Stockton Blvd, #110 Elk Grove, CA 95624 Nutrishare focuses exclusively on home TPN care and honors consumers’ rights to choose their health care providers and products. Nutrishare, together with the Oley Foundation, is proud to launch the Option Care, Inc* Nutrishare Research Prize, designed to encourage 485 Half Day Rd, Ste 300 clinical research that will improve the quality of life for home TPN consumers. The entire Nutrishare Buffalo Grove, IL 60089 For more than 25 years, Option Care, Inc. has made family share in the honor of pioneering Oley’s new patients’ lives easier with a full range of health care Platinum Level of corporate support. services outside the hospital setting. Option Care has one of the largest home infusion and specialty pharmacy footprints in the industry. Services are provided by highly skilled clinical professionals from 113 pharmacy locations. NUtriThrive* 10828 Kenwood Rd Cincinnati, OH 45242 NutriThrive is proud to be the newest member PromptCare Home Infusion of the Oley community. We are dedicated to providing highly individualized home enteral and 51 Terminal Ave parenteral nutrition therapy, programs and services Clark, NJ 07066-1002 through comprehensive management. Our mission PromptCare Home Infusion is a regional provider

21 Exhibitors (con’t) of home infusion therapies and services in the New York metropolitan area. PromptCare provides a full range of home infusion therapies servicing consumers from newborns to geriatrics. Therapies include TPN, antibiotic, antiviral and antifugal Zevex, Inc* therapies, as well as cardiac therapy, IVIG and 4314 Zevex Park Ln pain management. Salt Lake City, UT 84123 ZEVEX introduces the EnteraLite® Infinity® enteral feeding pump. The EnteraLite Infinity is highly portable, +/- 5% accurate, easy to program, and rugged—it can be washed under running water without fear of damage! Weighing less than 15 ounces and with 24-hour battery, it removes Ross Products Division, barriers faced by tube-fed patients. Abbott Laboratories* 625 Cleveland Ave Columbus, OH 43215 Abbott Nutrition supports the Oley Foundation so that they may enhance the lives of home nutrition support patients, their families, and their caregivers. Abbott Nutrition manufactures and distributes medical nutritional products such as:PediaSure® Enteral Formulas,Vital jr.™, Jevity® 1.2 Cal with the prebiotic NutraFlora® scFOS®, and the Embrace® ambulatory feeding pump.

Tyco Healthcare/Kendall 15 Hampshire St Mansfield, MA 02048 Stop by to see the new KANGAROO JOEY™, the only ambulatory enteral feeding pump that feeds and flushes; new Salem Sump™ with GiENTRI™ PORT, allows feeding, suction, irrigation and medication in closed system for GI Management while promoting improved infection control; and the new NutriPort™ skin level balloon gastrostomy system with longer balloon life.

22 Conference Faculty

Kimberly C. Aronhalt, RN, BSN her interest in intestinal failure, she now heads Mayo Home Parenteral Nutrition the intestinal support service at Columbus Mayo Clinic Children’s Hospital. 200 First Street SW Rochester, MN 55905 Patricia A. Brown, RN, MSN, Kimberly has been practicing as an RN since CNSN, OCN 1977, working in various clinical settings in the Nurse Clinician Clinical Nutrition Midwest. Kim has been working at Mayo Clinic Memorial Sloan-Kettering Cancer in the Division of Gastroenterology-Hepatology Center with its Home Parenteral Nutrition Program as Box 257 1275 York Ave a patient educator. She has been responsible for New York, NY 10021 educating patients in safe, self-management of Pat started in Nutrition Support in 1977 at their home parenteral nutrition, and the develop- MSKCC working under the directorship of ment of HPN patient education materials. Maurice E. Shils, MD. She continues to work with inpatients and outpatients on enteral and Penny Allen, RD, LD, CNSD parenteral nutrition. She enjoys helping them National Director, Nutrition Support meet the challenges of living with HPEN and Critical Care Systems loves to see them have the opportunity to travel. 61 Spit Brook Road She has volunteered for the Oley Foundation since the very beginning as an advisor, treasurer, Nashua , NH Zip 03060 conference chair and board member. Penny has been a registered dietitian since 1983 specializing primarily in parenteral nutrition since 1989. She is a member of ASPEN and Alan L. Buchman, MD, MSPH is certified in nutrition support. Penny directs Medical Director, Intestinal Rehabilitation Critical Care System’s Specialty Nutrition & Transplant Ctr, Director, Inflammatory Support program in 42 branches. This includes Bowel Disease Ctr; Assoc. Professor of clinical management of home TPN patients; Medicine & Surgery; Oley Trustee reviewing and educating staff on PN Standards of Feinberg School of Medicine, Care; assisting with Medicare TPN patient issues; Northwestern University and providing nutrition support education to 676 N St Clair St, Suite 1400 payers, hospital and physician groups. Chicago, IL 60611 Dr. Buchman began his career in home PEN in Jane P. Balint, MD 1989 as a trainee of Dr. Marvin Ament at UCLA. Director, Intestinal Support Service; Oley Over the years, he has taken care of hundreds Trustee of home PN and intestinal transplant patients, Columbus Children’s Hospital and over 1500 patients with inflammatory bowel 700 Children’s Drive disease. Dr. Buchman is actively engaged in the Columbus, OH 43205 discovery of the causes and new therapies for Dr. Balint has been taking care of children complications related to these diseases. Dr. Buch- on enteral and parenteral nutrition for more man and his team at Northwestern continue to than 25 years, first as a pediatric nurse, now make seminal discoveries that they hope translate as a pediatric gastroenterologist. Because of to improved patient care.

23 Faculty (con’t)

David Burns, MD, CNSE with Oley as a member of the Board of Trustees Director, Nutrition Support Service, and as a Regional Coordinator. He shares his Senior Staff Gastroenterologist experiences “surviving socially” and with living as Lahey Clinic normally as possible with homePEN therapy. Burlingon, MA 01804 Dr. Burns trained under Dr. George Blackburn Ann Hill DeBarbieri at Deaconess Hospital in 1993. He has directed Consumer the nutrition service at Lahey Clinic for eight 20 Heather Drive years, and has about 30 homePN patients. He Gansevoort, NY 12831 is a gastroenterologist and specializes in placing Ann has been on HPEN in various forms since enteral devices. 1987 due to multiple bowel surgeries to address Gardner’s syndrome. For many years she was Faye Clements. RN was on I.V. or enteral supplementation during Research Nurse Coordinator the night while she worked during the day as University of Kansas an attorney. Since May 2001, she has been on disability because she is now on I.V. nutrition School of Nursing and hydration 19 or more hours per day. She Family Care Research attended her first Oley conference in 1989. 3903 Rainbow Blvd Kansas City, KS 66103-9815 Mark DeLegge, MD Faye has 40 years of nursing experience in Home Professor of Medicine Health, Public Health, Acute and Chronic Nurs- Medical University of South Carolina ing Care. She currently serves as the Primary Intervention Nurse on a TPN grant with Dr. 96 Jonathan Lucas St, Ste 210 Carol Smith, RN, PhD, PI, with responsibility Charleston, SC 29425 for recruitment of patients and caregivers, and Dr. DeLegge started working in nutrition provision of nursing protocols per phone and support in 1989. He is now the Director of telehealth contact. Nutrition and the Director of the Digestive Disease Center at the Medical University of Rick Davis South Carolina. HEN Consumer; President, Oley Marianne Duda, MS, RD, LD, CNSD Foundation; Regional Coordinator National Nutrition Program Manager 375 9th Ave OptionCare, Inc. Salt Lake City, UT 84103 Rick is 100% dependent on enteral nutrition, 2880 Scherer Dr, Suite 850 since a stroke paralyzed his esophagus in De- St. Petersburg, FL 33716 cember 2000. He struggled with tube, formula Marianne has over 25-years experience in pro- and other equipment and supply problems, as viding clinical nutrition services to individuals, well as with social and psychological issues. He with nine-years experience providing homePEN was frustrated and depressed until he discovered therapies. Today she serves as the National the Oley Foundation in 2002. Since then, he has Nutrition Program Manger, the South-South learned to manage his tube feeding efficiently East Region Nutrition Manager, and leader and has regained quality in his life. He volunteers of the Corporate Nutrition Support Team.

24 Faculty (con’t)

She currently serves on the certification exam Yi Lisa Hwa, NP committee of the National Board for Nutrition Nurse Practitioner Support Certification and just completed service Mayo Clinic on the A.S.P.E.N. Self-Assessment Committee. Mayo E 19, Home TPN She is a reviewing editor for Support Line, and Rochester, MN 55905 has served as an adjunct faculty member at the Lisa has more than ten years nursing experience University of Tampa, and past-president of the in providing care and education to the oncology Florida chapter of A.S.P.E. N. patients who require parental and enteral nutrition in the hospital setting. She completed a Kathleen M. Gura, PharmD, Masters Degree in Nursing and has been working BCNSP as a Nurse Practitioner at Mayo Clinic since Clinical Pharmacist GI/Nutrition 2002. She recently joined Dr. Kelly’s team with Children’s Hospital Boston the Mayo Home Parental Nutrition program. 300 Longwood Avenue She is especially interested in infection control Boston, MA 02115 and complications prevention related to long- Dr. Gura has been a member of the Clinical term HPN. Nutrition Service at Children’s Hospital Boston for over 20 years and is also part of the recently Carol Ireton-Jones, PhD, RD, established Center for Advanced Intestinal LD, CNSD, FACN Rehabilitation (CAIR). She is a clinical phar- National Director, Nutrition Services macist and is board certified in nutrition. Her Coram, Inc interests include parenteral nutrition associated 170 Countryside Drive liver disease, short bowel syndrome and issues surrounding the prescribing and compounding Carrollton, TX 75007 of parenteral admixtures. Dr. Ireton-Jones has been a nutrition support dietitian for over 29 years and a home care dietitian for over 17 years. Her area of interest Lyn Howard, MB, FRCP, FACP is energy metabolism. She developed the Ireton- Medical & Research Director, Oley Jones equations which are used in critical and Foundation; Former Head, Division of acute care for determining energy requirements. Clinical Nutrition, AMC She is also works on improving the lives of Albany Medical Ctr, A-28 HPEN patients, connecting them with clinical, Albany, NY 12208 reimbursement, and other resources. Dr. Ireton- Together with Clarence Oldenburg, Dr. Howard Jones is presenting a “cooking class” at the Oley established the Oley Foundation in 1984. meeting because she wants consumers to feel that In the early 1970s she sent her first patient they can eat (with their doctor’s permission) and home on nutritional support and since then it doesn’t have to be tasteless! has been published widely in the homePEN area. She is an advocate of the consumer voice KiNamesshore and R. addressesIyer, MBBS, are provided FRCS, for in the organization and implementation of educational purposes only. The Oley HPEN. We celebrate her contributions to the Foundation requests that in the true spirit Oley Foundation and the field of nutrition of the Oley mission, this listing not be used support. for the purpose of sales in any way.

25 Faculty (con’t)

FACS Darlene G. Kelly, MD, PhD, FACP Director, Intestinal Rehabilitation; Oley Vice President, Oley Foundation; Associate Trustee Professor of Medicine; Consultant in GI Mount Sinai Medical Center and Hepatology, Mayo Clinic College 1425 Madison Ave, Box 1104 of Medicine New York, NY 10029 Mayo Clinic Rochester Dr. Iyer trained in the UK between 1987 and 200 First St, SW 1996 in general and pediatric surgery, with Dr. Rochester, MN 55905 Adrian Bianchi and Professor Lewis Spitz. He Dr. Kelly has been the Medical Director of trained in transplant surgery in Chicago and Mayo’s HPN Program for 15 years. She is Vice Omaha between 1996 and 1999, and worked President of the Oley Board, and has been a in Omaha in liver and intestinal transplantation Trustee since 1998. She is a gastroenterologist until 2003. He established and directed the with a major interest in short bowel syndrome, Intestinal Rehab Program in Omaha between malabsorption, malnutrition, complications of 2000 and 2003. He established and directed HPN, and hydration issues. She looks forward the Intestinal Rehab and Transplant Program to helping OLEY cooperate with the Europeans at Children’s Memorial and Northwestern to learn something about the quality of life of University between 2003 and 2006. He now is individuals on homePEN. establishing an Intestinal Transplant Program at Mount Sinai in . His special in- Mark G. Klang, RPh, BCNSP, terest is in non-transplant surgical management PhD (Cand) of intestinal failure and TPN-associated liver Head, Research Pharmacy disease. Dr. Iyer was among the first to identify Sloan-Kettering Institute plant sterols in lipid emulsion as a possible cause RRL-747, 430 East 67 Street for liver disease in TPN. New York, NY 10021 Mark has been involved in specialized nutrition Jayne Justice, RN support for over 25 years. He has studied, published Regional Vice President and presented many issues in nutrition support in InfuScience, Inc. the USA and internationally. He is especially in- 2915 Waters Road terested in the changes in drug absorption when Inver Grove Heights, MN 55121 the medications are placed in a feeding tube. Jayne has worked in both hospital and homecare His PhD thesis work involves the interaction of settings for 19 years. She began her career in the phenytoin when combined with EN. hospital working on oncology, transplant and intensive care units, and for the past 15 years, Kevin G. Miller, Dc has worked in the home infusion setting. Jayne Chiropractic Physician, Injury Prevention has launched and worked with multiple home Consultant, Miller Chiropractic, Inc.; nutrition teams, and has extensive experience in Medical Staff, Women & Infants managing the full spectrum of the consumer’s Hospital care. Her interests include the care of long-term nutrition infusion consumers, complications and 863 Broadway consumer quality of life. East Providence, RI 02914 Dr. Miller has 24-years experience with HPN via

26 Faculty (con’t) his son Jonathan who was born with gastroschisis, and after many subsequent surgeries was left with Mark Puder, MD, PhD short bowel syndrome. Dr. Miller’s experience as Children’s Hospital Boston a chiropractic physician/injury prevention consul- 300 Longwood Avenue, Fegan 3 tant over the past 16 years has allowed him to pro- Boston, MA 02115 vide pain relief, as well as help others achieve their Dr. Puder has been participating in research at optimal balance and potential for health—without Children’s Hospital Boston since 2001, while the possible negative side effects of medication or specializing in pediatric surgery. He has been surgery. He plans to educate consumers on the studying parenteral nutrition and its effects on benefits and procedures of various complementary the liver. His work has demonstrated injury health care practices. results, in part, from the intravenous lipid solution that is given to patients. His team has Reid A. Nishikawa, Pharm D, discovered an approach for the prevention of liver BCNSP, FCSHP injury that involves replacing the lipid emulsion Director of Research; Coordinator, with a less toxic emulsion. A prospective Clinical Services randomized trial to test this emulsion in children Nutrishare, Inc is about to begin. 10519 E Stockton Blvd, Suite 110 Elk Grove, CA 95624 Leonel Rodriguez, MD Dr. Nishikawa is the Coordinator, Clinical Director, Pediatric Motility Center Services and Director of Research for Nutrishare, Massachusetts General Hospital, Harvard Inc. He has been involved with nutrition support Medical School for the past 25 years. He is actively involved with 175 Cambridge St ASPEN and ASHP. He has presented research CPZ 5th Floor, #564 related to long-term nutrition support at local, Boston, MA 02114 national, and international meetings. He is Dr. Rodriguez began the Pediatric Motility Center a recent recipient of an ASPEN award as the in 2000. His main specialty is gastrointestinal Distinguished Nutrition Support Pharmacist motility disorders in children, particularly chronic of the Year. idiopathic intestinal pseudo-obstruction.

Diane V. Owens Douglas L. Seidner, MD HEN Consumer Director, Nutrition Support Team, 9 Oak Street Cleveland Clinic Foundation; Oley Marion, MA 02738-1136 Trustee Diane has been on TPN and tube feedings since 9500 Euclid Ave A30 1993. Her experience has enabled her to help others on the Oley Toll-free Line over the years. Cleveland, OH 44195 Diane has researched many of the problems that Dr. Seidner has been practicing in nutrition sup- plagued her life, and has written about solutions port for 19 years. His training includes Nutrition in the LifelineLetter. It gives her great joy to speak and Metabolism with Drs. Bistrian and Black- to new enteral consumers on the phone, often burn at the New England Deaconess Hospital in relieving the anxiety that is endemic to a new Boston, and GI at George Washington University and daunting journey. Medical Center. His interests include parenteral and enteral nutrition, short bowel syndrome and 27 Faculty (con’t) inflammatory bowel disease. with TPN coverage issues.

Ezra Steiger, MD, FACS, CNSP Marion F. Winkler, MS, RD, Director, Intestinal Rehab Program; Co- LDN, CNSD Director, Nutrition Support Team Surgical Nutrition Specialist Cleveland Clinic Foundation Hospital, Department of 9500 Euclid Ave A80 Surgery/Nutritional Support Service Cleveland, OH 44195 593 Eddy Street, NAB 218 Dr. Steiger was involved in early PN clinical and Providence, RI 02903 research work with Drs. Dudrick, Wilmore, Vars Marion has over 25 years experience in nutrition and Rhoads at the University of Pennsylvania. support practice working in both acute and home Since 1975 he has started the nutrition sup- care. She also serves as a home care nutrition port team, home parenteral nutrition program, consultant for Clinical I.V. Network (CIVN) home health service and intestinal rehabilitation in Pawtucket, RI, providing nutritional assess- program at the Cleveland Clinic. His current ment and monitoring of individuals receiving interests are parenteral nutrition support in homePEN. She is currently a PhD candidate at the hospital and at home, and intestinal reha- the University of Medicine and Dentistry of New bilitation. Jersey. Her doctoral dissertation and research interests focus on quality of life for individu- Jody Strain als dependent on home parenteral nutrition. Reimbursement Manager Marion just completed a term as President of Nutrishare, Inc. the American Society for Parenteral and Enteral 10519 E. Stockton Blvd. #110 Nutrition (A.S.P.E.N.) and will continue as a member of the Board of Directors for an ad- Elk Grove, CA 95624 ditional year. Jody has worked in the home infusion industry since 1984. She has many years of experience in most areas of coverage/insurance for home Don Young infusion. She currently spends most of her time Consumer Liaison for Oley Foundation 299 Ormsbee Road Porter Corners, NY 12859 Don has Crohn’s disease and has been on HPN for thirty-two years. In that time, he’s had ex- perience with about two dozen catheters of all

Thanks to all the faculty who volunteered to share their expertise in home nutrition support and related issues. The success of the Oley Conference relies heavily on the efforts of these dedicated individuals!

28 Conference Ribbons

You’ve probably noticed several people milling about the conference wearing ribbons on their badges. To unravel the mystery, below is a color-coded guide to the ribbons:

Ribbon Color indicates Teal New Attendees...please make them feel welcome!

Lavender Conference Coordinator

Navy Blue Conference Co-Chair

Red/White/Blue Faculty

Dark Blue Regional Coordinators

Red Award Winners

Green Award Nominees

Purple Exhibitors

Light Blue Oley Board Trustees

Pink “Ask Me” Canary 15+ Year HPEN Consumer Black 20+ Year HPEN Consumer

Lime Green 30+ Year HPEN Consumer

29 Horizon Society

Many thanks to those whose commitment and dedication to the Oley Foundation has led them to arrange a planned gift to help ensure continuing support, service and advocacy for homePEN consumers and their families. Members of the Horizon Society are:

John Balint, MD Darlene Kelly, MD Joan Bishop Family of Shirley Klein Ginger Bolinger Robin Lang Pat Brown, RN, CNSN Hubert Maiden Katherine Cotter Judi Martuscelli Jim Cowan Kathleen McInnes Ann & Paul DeBarbieri Meredith Nelson Tom Diamantidis, PharmD Nancy Nicholson Selma Ehrenpreis Rodney & Paula Okamoto, RPh Herb & Joy Emich Kay Oldenburg Don Freeman Judy Peterson, MS, RN Linda Gold Clemens Pietzner Linda Gravenstein Beverly Promisel The Groeber Family Abraham Rich Valerie Gyurko, RN Roslyn & Eric Scheib Dahl Alfred Haas Steve Swensen Shirley Heller Cathy Tokarz Alicia Hoelle Eleanor & Walter Wilson Jeff & Rose Hoelle James Wittmann Lyn Howard, MD Patty & Darrell Woods William Hoyt Rosaline Ann & William Wu

If Oley was there for you and your family in a substantial way, please think about joining these individuals as a member of the Oley Foundation Horizon Society. This is our best chance of making sure Oley is there for the next consumer and the next. Please see Joan Bishop about any questions you may have regarding planned gifts.

30 Horizon Society (con’t)

We owe an enormous nod to the late Shirley Heller. We always recognized and admired Shirley’s passion and enthusiasm for Oley efforts. She was a steadfast supporter, both financially and emotionally. While still mourning her passing, we received word from the attorney handling Shirley’s estate that she had bequeathed almost $18,000 to the Oley Foundation. Nothing or no one can replace Shirley, her suggestions and her overall presence. She was one in a million. We sincerely hope that she is resting in peace knowing that her final contribution will go a long way in helping to preserve the programs that she found so precious.

31 In Loving Memory

Friday morning we will pay tribute to people in the homePEN community who have passed away since last year’s conference. If there is someone special you’d like to have mentioned, please add their name(s) to the listing at the registration desk Thursday. Preston Adams Helen Lown Taylor Beebe Esperanza Mestres Ruth Bennett Barbara Middleton Eleanor Bristow Myrna Mitchell Lloyd Brown Elaine Mjoen Peggy Brown Mary Morse Jean Bryant Patricia Nadolny James Burns Donald Nichols Gene Bussoletti Kyle Noble Wendi Calmo Ray Pestle, Jr. Shirley Camp Dennis Peterson Leonard Chang Richard Petty Kyle Chapman Disney Pfeiffer Estelle Childs Helen Pribonic Allison Clark Raymond Rossi Edith Connasser Jane K. Russell Daniel Conran Lawrence Salivar Theresa Cooke Paul Sawitski Jim Crozier Brandon Shaw Dorothy Dobson Dale Smay Paul Joseph Durham Clyde Smith Bob Emms Michael Speshock Jay Foster Ronald Stapleman Robert Fowler Ethel Stephan Joseph Furlotte Janet Streat Marie Hartwick Thomas Sylvester Lucy Hattis Carl Turlin Andrea Johnson Dale Vanderhide Barbara Kabeary Phyllis Wakefield Joseph Kelly Nancy Webb Eleanor Kennedy Will Weitman Pam Kessler Joel Winston John Howard Key

32

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Oley Corporate Partners

The following companies provide over one-half of the funds needed to support Oley programs all year long. Corporate relationships also strengthen our educational and outreach efforts. For their continued interest and strong commitment we remain grateful.

PLATINUM LEVEL PARTNERS ($70,000+) Nutrishare, Inc.

GOLDEN MEDALLION PARTNERS ($50,000-$69,999) Coram, Inc. NutriThrive

SILVER CIRCLE PARTNERS ($30,000-$49,999)

BRONZE STAR PARTNERS ($20,000-$29,999) Apria Healthcare

BENEFACTOR LEVEL PARTNERS ($10,000-$19,999) Novartis Nutrition Ross Products Division/Abbott Laboratories

PATRON LEVEL PARTNERS ($5,000-$9,999) Critical Care Systems EMD Serono, Inc. Hospira Worldwide, Inc. Option Care, Inc.

BLUE RIBBON PARTNERS ($2,500-$4,999) Baxter Healthcare B. Braun Kimberly-Clark Nestle Nutrition Sherwood Clinical Sigma International

CONTRIBUTORS ($1,000-$2,499) Baxa Corporation Zevex, Inc. In Case You’re Wondering...

During the conference you may notice meetings or gatherings that aren’t announced anywhere, and wonder what is going on. The answer is that there are a few activities that happen at the Oley Conference that not all conference attendees participate in.

For example, a meal or outing may be hosted by a company for their customers who at- tend the Oley conference. It is a way for them to thank their customers and get to know them better. Oley’s policy prohibits companies from inviting people who aren’t already receiving their products or services, and from holding them during times that conflict with scheduled Oley activities.

On Friday the Oley Board of Directors meet. You are invited to share your comments and/or suggestions during the Town Meeting Friday evening, or ahead of time with any one of the members. Your consumer representatives are especially interested. They include: Rick Davis, Jane Golden, Michael Medwar and Sheila Messina. Oley is your organization, and functions best with your input.

If you have any questions about these gatherings or any other part of the Oley Confer- ence, please feel free to ask an Oley staff member at the registration desk. We strongly advise that you discuss any medical information received from the Oley Foundation through the newsletter, conference presentations, informal discussions, etc. with your physician before making any changes in your health care.

214 Hun Memorial Albany Medical Center, MC-28 Albany, NY 12208-3478 (800) 776-OLEY, (518) 262-5079, FAX (518) 262-5528 [email protected] www.oley.org

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