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 Cape Cod! 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, New York, 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.