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LifelineLetterLiving with home parenteral and/or enteral nutrition (HPEN)July/August 2015

What’s Inside:

Tube Talk: ENFit and Pill Crusher

Page 3

Oley Conference Photos

Pages 4–5

Congratulations to Oley Award Winners

Pages 6–9

HPN Research Prize Winners

Page 10

Camp Scholarship Winners

Page 10

Conference Thank Yous

Pages 12–13

Creativity Fuels Renewal

Page 14

Donor NewsPages 14–15

Board SpotlightPage 16

Oley CalendarPage 16

Securing a CVAD, cont. pg. 2 ☛

Conference, cont. pg. 14 ☛

Help along the way

Oley celebrated its 30th conference this June with great speakers and much fanfare!

Sharing and Celebrating at Oley Conference Rain gave way to sun just in time for the golf outing that kicked off Oley’s 30th Annual Consumer/Clinician Conference at the end of June in Saratoga Springs, New York. It was just the start to a busy week, full of opportunities to learn and socialize. What did we do? First and foremost, we learned: about bacterial overgrowth, the latest (and basics) in line care, preventing clogged tubes, handling social oc-

cassions when you cannot eat, grow-ing up on HPN, and so much more. (Watch for articles inspired by confer-ence presentations

in upcoming issues, and watch the videos from the conference—see www.oley.org for their availability!) There was fun in child care and youth activities; we celebrated anniversaries on HPEN and presented Oley awards (see pages 6–9); we mingled at the silent auction and built sculptures of recycled materials at the picnic

while listening to blue grass and jokes performed by Al and Kathy Bain (see photos pages 4–5). Joy, an HEN consumer who attended the confer-ence this year for the first time, sums it up eloquently: “I wasn’t quite sure what an Oley Conference would be like and it by far exceeded any expectations I had

Save the Dates! 2016 Oley Conference

July 5–9Newport Beach, CA

Securing a Central Venous Access DeviceMary T. Tessier, RN, Vascular Access Specialist For those who live with a central venous access de-vice (CVAD), daily care and maintenance is an issue. Keeping lines clean and secure is critically important for avoiding infection and preserving the lines. When the line moves back and forth, it can introduce bac-teria beneath the skin and into the bloodstream. Improved stability can help prevent infections from occurring. Yet anyone who has had a peripherally inserted central catheter (PICC), port, tunneled catheter or nontunneled catheter knows the difficulties in maintaining security and comfort, and the major complication that losing a CVAD can pose. Several products have been manufactured to provide securement of needles and tubing. Not every one is right for every patient. Trial and error become the norm as patients try to find what works best for them. Here we introduce you to some options to secure your line.PICC Lines Statlock® (Bard Access) is a stabilization device for PICC lines. It is latex free, and intended to prevent

movement and/or dislodgement of the catheter. As with most devices, however, it does not anchor the length of the catheter, which can become cumbersome, heavy, and a potential threat. Occupations, children, pets, and just daily maneuvering can cause dislodgement of

the catheter if it gets tangled during daily activities or during sleep. I have had patients use a long tube sock with the foot cut off to help provide more security of the line. Wearing long-sleeved shirts also provides another measure of security to prevent the line from catching on

objects. Other patients purchase “fish net” tubular bandaging (such as Surgilast® or Surgitube® [both Derma Sciences], or Curad® Elastic Net) from medical supply stores. These can provide added comfort and an additional safeguard. PICC or Tunneled or Nontunneled Catheter Grip-Lok® (TIDI) is another securement device available for purchase. Grip-Lok is a universal se-curement device. It is available in multiple sizes for

Statlock® by Bard Access

Superglue? Sometimes it seems like the only answer, but obviously it is not a realistic one. Sutures? To prevent needle stick injuries and increased risk of infection, the Centers for Disease Control (CDC) and Occupational Safety and Health Administration (OSHA) recommend that lines not be sutured in. Many

practitioners, however, continue to suture devices in place, placing themselves and the patient at risk. IV Tubing Tubing can be bothersome and pose a risk of acciden-tal dislodgement due to the weight of the tubing/filter. Some patients find that making a tube top of stretchy mesh stockinette helps. Another method of securing the tubing is to coil the tubing around on itself close to the insertion site and tape it in place. The drawback of this is removing tape frequently may damage or tear skin. Changing the site of at-tachment frequently and using a removable skin adherent (such as Medco Sports Stik-It®) will help maintain skin integrity. So what is the answer? Your best resource is your vascular access specialist. Discussion forums and conversations with other users is also beneficial. Tak-ing advantage of every re-source available cuts down on the guesswork. Sharing your experiences will help others with the same issues. But remember: different measures work for different people. What works for one person may be a nightmare

for another person. Continued product de-velopment is under way, and until someone develops a product that provides securement, comfort, and safety for all, it is trial and error.Editor's note: If the catheter tubing comes out of the insertion site, do not push the tubing back in. Contact your health care professional. ¶

Medical Update

2 — LifelineLetter • (800) 776-OLEY July/August 2015

LifelineLetterJuly/August 2015 • Volume XXXVI, No. 4

Publisher:

Help along the way

43 New Scotland Avenue Albany Medical Center, MC-28

Albany, NY 12208 1-800-776-6539 or (518) 262-5079

Fax: (518) 262-5528www.oley.org

Executive Director: Joan Bishop

[email protected]

Editor, LifelineLetter; Director, Community Engagement:Lisa Crosby Metzger

[email protected]

Communications & Development Director: Roslyn Dahl

[email protected]

Administrative Assistant: Cathy Harrington

[email protected]

Executive Assistant: Andrea Guidi

[email protected]

Administrative Support Specialist:Meshal Samadzada

[email protected]

Science & Medicine Advisor:Darlene Kelly, MD, PhD, FACP

Medical Director/Co-Founder: Lyn Howard, MB, FRCP, FACP

Lifeline Advisory Group:Charlene Compher, PhD, RD, CNSC, LDN; Fran

Culp; Rick Davis; Debbie Fox, MS, RD; Sue Koprucki; Rex Speerhas, RPh, BCNSP; Mary Tessier, RN

Oley Board of Trustees:Harlan Johnson, President; Terry Edwards, Vice President; Marion Winkler, PhD, RD, LDN, CNSC, Treasurer; Rex Speerhas, RPh, BCNSP, Secretary; Lynn Anderson; Debbie Fox, MS, RD, LD; Peggi Guenter, PhD, RN; Shirley Huang, MD; Arlet Kurkchubasche, MD, FACS, FAAP; Laura Matarese, PhD, RD, LDN, FADA, CNSC; Ann Michalek, MD; Lauren Schwartz, MD; Bob and Mary Smithers

Subscriptions:The LifelineLetter is sent free of charge to those on home parenteral or enteral nutrition. There is no charge for others as well if they receive the newsletter electronically.

The LifelineLetter is the bi-monthly newsletter of the Oley Foundation. Items published are provided as an open forum for the homePEN community and should not imply endorsement by the Oley Foundation. All items/ads/suggestions should be discussed with your health care provider prior to actual use. Correspondence can be sent to the Editor at the address above.

different purposes (PIV, PICC, CVL). The product is latex free. SecurAcath® (Interrad Medical) is fairly new to the market. It is placed at the same time a PICC or CVAD is inserted. The SecurAcath is comprised of an anchor-type piece and a cover. First the small anchor is placed directly under the skin and the catheter is placed in a groove, then the device cover (the orange portion in the photo) is snapped on to grip the catheter. The device helps pre-vent migration and dis-lodgement while allowing for 360-degree cleaning around the insertion site. One of the benefits of the device is that it does not need to be removed weekly with dressing changes. The device is placed and can be left in for the duration of the catheter. Any CVAD SorbaView Shield® (Centurion) combines a dressing or covering with securement—a stabiliza-tion device embedded in the dressing. It can be placed over any type of CVAD (PICC, tunneled or untunneled catheter, or accessed port). It has a large window for visualiza-tion and is designed to stay in place for comfort and security. Then we look at tape. Yup—good, old-fashioned tape. Taping the catheter tubing can preserve lines and provide added confi-dence in patients. Tape can be an excellent securement, but it can also be detrimental to fragile skin. The constant application and removal of tape can irritate and/or tear skin. Open areas around insertion sites are difficult to heal and can increase the chances of developing infection.

Securing a CVAD, from pg. 1

Grip-Lok® by TIDI

SecurAcath® by Interrad Medical

SorbaView Shield® by Centurion

Surgilast® by Derma Sciences

Volume XXXVI, No. 4 (800) 776-OLEY • LifelineLetter — 3

Tube Feeding Tips

Tube TalkSend your tips, questions, and thoughts about tube feeding to [email protected]. Information shared in this column represents the experience of the individual and should not imply endorsement by the Oley Foundation. The Foundation strongly encourages readers to discuss any suggestions with their clinician before making any changes in their care.

AMT Clamp™

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Clear Silicone Y-PortMake sure to push and twist the “Christmas

Tree”/ Stepped Adapter to the second indicator line for a secure fit.

Clamp It!The AMT Clamp™ device can reduce disconnects between the “Christmas Tree”/Stepped adapters and your feeding sets. You’ll ensure the patient receives essential nutrients while avoiding the mess of lost formula. Order # 4-3000

ENFit Connectors are an ISO Required Global Industry Change & FDA Regulated. Visit StayConnected.org for additional information on the ENFit System.

For Additional Support800 869 7382

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AMT Clamp™ withClear Silicone Y-Port

ENFit“Christmas Tree”/ Stepped

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AMT Clamp™ withPurple Y-Port

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Second Indicator LineThird Indicator Line

First Indicator Line

ENFit TipFor secure connections:

• Wash formula and food off of ENFit transition adapter and dry before connecting to extension

• Wash extensions daily with dish soap to prevent slipping due to residue

• If in doubt, use an AMT Clamp™ for added security (see photo on far right).

• Over-tightening seems to be the leading cause of leaking and cracking of the ENFit end, therefore it is recommended to finger-tighten only.

Pill Crusher I crush medication [those that are OK to crush] using the CrushCup/Pill Splitter Set by CGS Inc., which has a unique way to easily crush any pills. See www.pillcrush.com/index.php/products/crushcup-pill-splitter. The CrushCup/Pill Splitter Set can be ordered online or by calling (800) 840-9966. I’ve tried many crushers/pill splitters over the years and the CrushCup crushes them all (pun intended!). I put my crushed meds in a shot glass, add water, stir, and bolus syringe. The syringe fits easily in the shot glass for drawing the med liquids.

—Jesse Jones, [email protected]

ENFit tip and photos reproduced with permission of Feeding Tube Awareness Foundation.

CrushCup/Pill Splitter Set by CGS Inc., shown in two sizes.

Editor's note: The Institute for Safe Medication Practices (ISMP) has a list of medications that should not be crushed on their Web site: www.ismp.org/tools/donotcrush.pdf. For tips on administering medications through a tube go to www.oley.org/TF_Troubleshooting_Guide_Page.html.

Conference News


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June 29–July 3

Saratoga Springs, NY


Conference News

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LifelineLetter Award, HEN: Janet Platt This award is given annually to a person who has been a home enteral nutrition (HEN) consumer for five years or longer, or his or her caregiver, who demonstrates courage, perseverance, a positive at-titude in dealing with illness or caregiving, and exceptional generosity in helping others in their struggle with HEN. Janet Platt, who has been attending Oley conferences with her brother, Sanford Schimel, since Sanford got his first tube in 2005, is this year’s recipient. Janet is a go-getter, helping Sanford with his medical needs, and known for her perseverance and outgoing nature. Janet says, “Having tubes is not going to keep Sanford from working or dating or traveling … and I will fight each and every one of those battles alongside him as needed.” “God bless the hospital social worker who told me about Oley when he got his first tubes, a J and a G, and thought his life was over,” Janet says. “Only three weeks after that lifesaving surgery, I dragged him against his will to [an Oley conference in] Saratoga Springs, New York, and we had our eyes opened. And we learned a lot of new vocabulary words: stoma, HEN and PEN and TPN, g-tube and j-tube and port.” This summer was the first Oley conference Janet and Sanford were unable to attend. They were missed—especially at the silent auction, where Janet has faithfully volunteered at checkout. “She’s seen me at my worst,” Sanford writes, “as when I lost 40 pounds before the tube was inserted. She’s been by my side for subsequent illnesses, such as viral meningitis. And she was the person who figured out that the first combination tube I got was for bedridden patients rather than ambulatory ones because I couldn’t figure out how to make it stop spewing intestinal fluid.” Janet loves traveling. She has traveled extensively with work (Aus-tralia, Japan, Thailand, Russia, parts of Europe…) and with her husband (Scotland, Wales, Mexico, and other parts of Europe). She speaks English, Russian, German, “and a few words in lots of other languages.” She is fascinated by languages, she says, and volunteers teaching English as a second language (ESL) to senior citizens. She also loves meeting people and getting to know them. Janet says, “Oley is an awesome venue for this, for finding people dealing with the same medical issues as you and then finding out how much else you have in common besides that.” In addition to helping Sanford as needed, Janet and her husband give of their time and money to a variety of causes, including generous support of the Oley Foundation. For many years they have supported a first-time attendee travel grant for the Oley conference. Janet writes, “Thank you Oley Foundation, for being there for all of us, and for this award.” Congratulations Janet!

Nominees: Taryn Fisher, JoAnna Gaumond, Shannon Gonsalves


Conference News

Congratulations to the 2015 Oley Award Winners

Rosaline Wu Janet posing with Sanford.

LifelineLetter Award, HPN: Rosaline WuSponsored by Nutrishare, Inc., Silver Circle Partner This award is given annually to a person who has been a home parenteral nutrition (HPN) consumer for five years or longer, or his or her caregiver, who demonstrates courage, perseverance, a positive attitude in dealing with illness or caregiving, and exceptional generosity in helping others in their struggle with HPN. Rosaline Wu was born with Hirschsprung’s disease. Her parents were told she would probably not survive long after her birth, and they made many sacrifices throughout her childhood and teenage years to keep her alive. They raised a strong woman, who became very determined to be independent, to make her own way, and to help others. Many years later, willing to share her story to benefit others, Rosaline wrote an article titled “My Parents Took Me Home to Die,” which was published in the Ostomy Quarterly magazine in 1980. “All the stories that I had read about Hirschsprung’s were the same,” she says. “‘The baby was born with it, and after one or two surgeries the child is now fine.’ That was NOT my story! I wanted to tell people, ‘You can still have a normal life, but you may have to go through more than what you were told.’” Later, Rosaline was diagnosed with pseudo-obstruction. She was put on HPN in 1989 and in 1992 wrote a second story for the Ostomy Quarterly about these new experiences. Rosaline’s desire to help others, especially those with GI disorders, has brought her close to the Oley Foundation, where she has volunteered as an Oley Ambassador (formerly Regional Coordinator) since 1992. In the 1990s, she and other volunteers ran a local Oley support group in the Detroit area. They met monthly, with guest speakers address-ing issues important to HPEN consumers and caregivers. Rosaline would put together a newsletter after each meeting to share with local members who could not attend. That group disbanded in 2002, but last year Rosaline reorganized a group for the Detroit–Ann Arbor area. They have had several meetings, and have discussed everything from drug shortages to estate planning. Rosaline says, “I am always asking our members for subjects that are of interest to them.…At our meetings we have members of different ages. Our eldest member is ninety-one years young and Joshua is going on three years old….My desire in life,” she continues, “is to help anyone with severe nutritional or digestive problems. I am always striving to achieve this goal.” Rosaline also seeks to enjoy her life. She loves to go to the movies with her husband and daughter. “After the theater,” Rosaline explains, “we go out for dinner—mainly for my husband’s and my daughter’s benefit. I can only eat a small amount of food. As [my husband] Bill will tell you, I’m a cheap date!” Congratulations Rosaline!

Nominees: Meenakshi Aggarwal, Megan Gravenstein, Janet Lewis, Jennifer Thiesse


Conference News

Celebration of LifeIn honor of Coram CVS/specialty infusion services, Gold Medallion Partner The Oley Foundation Celebration of Life Award recognizes someone who has been on HPEN for three years or longer and who lives life to the fullest. It is always difficult to select a winner! This year, we are fortunate to be able to offer two Celebration of Life Awards, one for adults (18 years of age and older) and a second for youth (under 18 years of age).

Youth: Natalie Wooten Natalie is seven years old. Her mother, Mary, writes, “When Natalie sets a goal for herself, she persists until she reaches that goal. Whether it’s bringing feeding tube awareness, learning to tie her shoes, learning to read, or dancing, she does not give up. She gives it her all, all the time. Her newest goal is learning to ride her bike!” It is important to Natalie that people are kind and fair to others. During Feeding Tube Awareness Week in February, she gave presentations at school, to her Girl Scout troop, and to her ballet class. “At the end of her presentations,” Mary writes, “Natalie emphasized that children with tubes are just like all the other kids and urged her classmates to befriend all children that have tubes, wheelchairs, insulin pumps, braces, etc. My little six year old is preaching toler-ance and acceptance to anyone who will listen. She is an inspiration to her family, teachers and friends.” She is also a nurturer. “She takes pride in taking care of her family,” Mary writes, “nurturing us by preparing snacks, reading to us, and comforting us. If someone gets hurt she is the first to run for Band-Aids and ice packs.” Natalie has two younger brothers, Oliver and Quinn. She enjoys reading them bedtime stories and playing with them. “When Oliver was born and she met him for the first time,” her mom writes, “Natalie counted his fingers and toes. She then un-wrapped his blanket, looked at his belly and asked where his ‘tubey’ was! She is always looking out for them.” Natalie has been taking ballet at Albany Berkshire Ballet for two years. “She doesn’t walk, but dances everywhere she goes,” Mary says, and she “lights up the room with her spunky personality. She is a natural entertainer and loves making people laugh. She always has a new joke to tell, and enjoys putting on ‘shows’ that showcase her dancing and singing.” “Natalie has been through a lot in her seven years of life,” Mary continues. “Even though she has almost daily stomach aches, tires easily and is smaller than her friends, she doesn’t let her circumstances get in her way. Nothing stops her! Her resilience amazes us every day.” Congratulations, Natalie!

Nominees (adult and youth): Wyatt Carr, Jana Daigle, Tiffany Dodd, Taryn Fisher, Sandra Hull, Mary Jeung, Tegan Watkins, Ally Winter

Adult: Emma Tillman, PharmD, PhD Emma Tillman, PharmD, PhD, is quietly determined, resourceful, and an inspiration to many. She lives in Memphis, Tennessee, where she works full time as an assistant professor in the Department of Clinical Pharmacy at the University of Tennessee Health Science Center. She does research on intestinal epithelial barrier function in response to parenteral nutrition. In addition to study-ing the effects of parenteral nutrition, she lives a life, as she so aptly puts it, “fueled by parenteral nutrition.” She says, “From a young age, I have been interested in science and innovation.” In middle school, she won a state invention fair and was featured in a book about young women inventing. Currently, her work en-compasses innovative biomedical research. Dr. Tillman enjoys spending time out-doors, running, walking, exploring, and sitting by the pool in the summer. Prior to getting sick in 2011, she was an avid runner and had set a goal to run a marathon in every state. She would travel with friends to compete in races of various distances—from 5Ks to marathons. In 2012, Dr. Tillman traveled to Portland, Maine, to visit a friend. There she ran the L.L. Bean Firecracker 10K. This was her gateway race back into her running adventure, and she hasn’t stopped since. After developing a plan to address the vomiting, nutrition, and fluid and electrolyte imbalance associated with long-distance running, Dr. Tillman completed the San Francisco Marathon in 2014—raising over six thousand dollars for Oley! In addition to running, Dr. Tillman has lots of other hobbies and interests that keep her busy. For one, she is an oboist. She earned her bachelor’s degree in oboe performance from Ball State University in 2002. She also loves to travel, and notes that she is fortunate to have some travel with her job. When going on a work trip, Dr. Tillman often extends her trip by one or two days to spend some time exploring. Dr. Tillman grew up in Union City, Indiana, on a pig farm. Family is very important to her. She loves being Aunt Emma to her two-year-old niece, Emmaline, and is anxiously awaiting the arrival of her nephew, Tillman, this summer. At the conference Dr. Tillman shared ideas on how HPEN con-sumers could deal with social situations that center around food. It was a popular topic and the discussions were lively. Dr. Tillman says, “Maybe sharing my story will inspire others to do what they love.” Congratulations, Dr. Tillman!

Emma Tillman, PharmD, PhD

Natalie Wooten

Awards, cont. pg. 8 ☛

Conference News


Awards, from pg. 7

Child of the Year Award: Navaiah FulkIn honor of ThriveRx, Gold Medallion Partner The Oley Child of the Year Award is given annually to a youth (18 years of age or younger) who has been an HPEN consumer for one year or longer and who shows a positive attitude in dealing with illness and HPEN which encourages and inspires others. This year’s winner, Navaiah Fulk, is a courageous fourteen year old who was diagnosed with gastroschisis before she was even born, when her mother, sixteen weeks pregnant, had an ultrasound. Navaiah had her first surgery when she was four hours old, and her first transplant (small bowel and liver) in 2002 when she was thirteen months old. She received a second small bowel transplant in 2014. Navaiah’s mom writes, “She had been very sick as we waited over a year for a call [about the transplant]. The morning of December 4, we got the call at 5:20 in the morning, and as we frantically got things ready to make the six-hour ride to [the hospital], Navaiah continuously reminded me that she was going to be okay, helping us keep calm and prepare for her surgery. She is such a coura-geous warrior!” Oley member Ann Alford, a friend and admirer of Navaiah’s, writes, “Navaiah is one of the kindest, sweetest young ladies you will ever meet. Though she suffers every day, she always has a smile. She always wants to help and will do so no matter how she feels, good or bad.” Another Oley member and friend to Navaiah, Robin Bodnar, writes, “I met Navaiah [when]…she was a patient [in hospital]….As we would do ‘laps’ with [our son] Andrew, walking in the halls, she would be in her doorway, cheering him on. Slowly we became friends. She would show us how to use the new accessories that Andrew now had. Even on the worst of days, she would be there smiling, and cheering on others….It was that wonderful smile that got us through our long days [in the hospital].” Navaiah, says her mom, loves arts and crafts. “She enjoys anything…drawing, painting, rainbow loom, duct tape art. You name it she will master it!” Robin notes that when she was in the hospital, Navaiah would work on crafts and give them to others, “to make them smile.” During each of the past four years, Navaiah has been able to enjoy a week at the Hole in the Wall Gang Camp in Ashford, Connecticut. Her mom says it’s “magical….Navaiah is able to enjoy an amazing week of fun, friends, and camp without worrying about her chronic illness.” Navaiah is a Cadette Girl Scout, and she is very excited by the prospect of attending high school next year. Although she was unable to attend this year's conference, we send Navaiah our congratulations and look forward to meeting her!

Nominees: Tori Bourland, Ellie Brogan, Rebecca Carnes, Wyatt Carr, Sergio Curkendall, Evelyn Delmenico, Arissa Dennis, Elena Dixon, Hope Knight, Sean May, Maddie Morris, Janessa Peck, Connor Poole, Dylan Prunty, Austin Rath, Alexandria Simoes, Logan Urbina, Tegan Watkins, Ally Winter, Natalie Wootten, Gabriella Zoppa

Innovator/Advocator Award: Shannon Gonsalves In honor of BioScrip, Platinum Partner Presented for the first time in 2014, this award is given to an HPEN consumer or caregiver of any age who sets an example by promoting innovation in nutrition therapy or by advocating for themselves or someone in their care. Shannon Gonsalves, as a schoolteacher, mother, and co-founder and director of Tubie Friends™, advocates for our entire community as she helps raise awareness, compassion, acceptance, and understanding of the needs of others—especially including those who are dependent on tube feeding. Shannon has been a full-time elementary school teacher for the last nineteen years, as well as a full-time wife and mother to a twelve-year-old daughter and nine-year-old son. Since birth, Shannon’s son has had medical challenges that have required hospitalization, surgeries, extensive tests, and a GJ-tube. In 2012, Shan-non co-founded Tubie Friends, a nonprofit organization that was created to bring aware-ness and comfort to kids who are tube fed. In talking about Tubie Friends, Shannon’s sister, Cristin Smock, says, “Children with feeding tubes often never see another tube fed person. They have a real need to relate to others like them, and Tubie Friends is an approachable way to meet that need.” She continues, “Individuals with disabilities need to know that they have a place in their com-munity, not to just be tolerated. It is Shannon’s mission to make life a better place for her own son and for all individuals who stand out as different for any reason.” Oley member Michele Juda notes, “Tubie Friends allows individuals to make both monetary donations and donations of excess supplies so children can be sponsored to receive a Tubie Friend at no charge. Community organizations, often those serving and involving children, have taken up the cause with events to stuff the…. animals that will become cherished friends and beloved companions, thereby increasing awareness, understanding, and compassion in the community at large. Other volunteers in this circle of support include the ‘surgeons’ who carefully place the medical equipment so each requesting child can have a Tubie Friend who looks just like them! I saw the difference this can make on a small scale when I presented my own son, still in a crib at the time, with a doll in which I had placed a Mic-Key g-tube. The look of recognition and joy that came over his face before pointing and saying ‘like me!’ will never be forgotten.” Since 2012, Tubie Friends has expanded to include children and adults who have many types of tubes or medical equipment. In 2014, the organization sent out 2013 customized “friends”! Congratulations, Shannon!

Nominees: Meenakshi Aggarwal, Peggy English-Vladyka, Taryn Fisher, Sanford Flach, Brenda Gray, Heidi Martin-Coleman, Linda May, Jennifer Rath, Candy Robero

Shannon GonsalvesNavaiah Fulk


Conference News

Great Escapes is Coram's national program designed to help you travel comfortably and safely with your nutrition support therapy. We support you for a trip across the country or around the globe!

Our Passport to Travel® contains everything you need to prepare. It includes tips and checklists of what to do before you plan your trip, how to pack, and whom to contact.

Our other travel resources include:

• Webinar on traveling with your nutrition therapy

• Rolling travel cooler• Small-volume TPN backpack• TSA liaison to support a smooth airport

screening process • Packing and planning checklist• Tips for international travel

For more information about Great Escapes or Coram’s Nourish Program, visit our website, WeNourish.com/Travel or contact:

Michael Medwar Coram Patient AdvocateP: [email protected]

WeNourish.com/Travel

Travel Program for Nutrition Consumers

Nourish is a service of Coram LLC

Nan Couts Award: Lillian Harvey-Banchik, MD, FACS, CNSCInspired by Judy Peterson, RN, MS The Nan Couts Award is presented annually to a clinician practicing in the HPEN or a related field who has shown a willingness to go “above and beyond” to educate, empower, and improve the life of HPEN consumers. Dr. Harvey-Banchik, who believes that patients deserve the best care at all times, dedicates her entire practice to providing nutritional support. She makes herself available to her patients, at least by phone, seven days a week (even while on vacation), and advocates for quality patient care in the legislative and insurance arenas. Dr. Harvey-Banchik firmly believes that the best way to empower patients is to make sure they understand everything possible about their condition and how nutrition is used to treat it. She also believes that physicians need to gain a better understanding of how nutritional therapy is used. To that end, she has been involved with the National Board of Nutri-tion Support Certification (NBNSC) for over a decade. As a member of the American Society for Parenteral and Enteral Nutrition’s Pub-lic Policy Committee, she is engaged in activities to document issues patients have encountered with accessing care, the latest results being published in the May issue of Nutrition in Clinical Practice. She has also testified at a New York State Assembly hear-ing, and for the past three years has joined the Digestive Disease National Coalition, meeting with her representatives to discuss patient access to home infusion therapy. Dr. Harvey-Banchik is a graduate of NYU School of Medicine. She completed a surgical residency at Mt. Sinai Hospital in New York, NY. During her residency she spent a year doing a research fellowship at Memorial Sloan Kettering Cancer Center studying the effects of various diets on chemotherapy-induced GI disorders. Dr. Harvey-Banchik believes in keeping abreast of the latest im-provement and updates in nutritional care and tries to incorporate them into her practice as soon as they are proven. She has evaluated technology ranging from exercise bracelets to programs designed to remind patients to take their medications on schedule. She has pre-sented programs she has developed at national meetings and makes the technology available to others for no cost as long as it is used for patient care. Dr. Harvey-Banchik believes that life’s challenges must be faced head on. From an early age she has pushed the limits to prove there is little you cannot do if you’ve got the motivation to succeed. She tries to impart this philosophy to her patients to motivate them to live life to the fullest. Congratulations, Dr. Harvey-Banchik!

Nominees: Jane Balint, MD; Meghan Dalton, NP; Peggi Guenter, PhD, RN, FAAN; Jeanne Harjo, RN; Claire McLaughlin, RN; Kevn McNamara, PharmD, CNSC, PRS, CVAA; Reid Nishikawa, PharmD, BCNSP, FCSHP; Sahar Whelan, RPh, BScPhm, MScPhm ¶

Lillian Harvey-Banchik, MD, FACS, CNSC


Conference News

HomePN Research Prize We were pleased to announce the winners of the HomePN Research Prize, sponsored by Nutrishare, Inc., at the annual conference. To be considered for the prize, the research must have been accepted for poster or oral presentation, or publication by a respected, relevant professional association. The article by Dr. Metzoff was published in the Journal of Parenteral and Enteral Nutrition (online February 2015). A summary of the research submitted by the three winners can be found below; full abstracts can be found at www.oley.org. For help understanding research, see “What Makes a Research Study Valid” at www.oley.org/lifeline/researchvalid.html.

Mental Health Support of Consumers and Caregivers on Home Parenteral and Enteral (HPEN) Therapy Abigail Brogan, ThriveRx, Ohio HPEN consumers and their caregivers frequently experience an emotional toll from their diagnosis as well as their medical therapy. Many also note a lack of support within the medical community. Prior research has reported incidence of anxiety and depression among those with chronic medical conditions as well as among those on HPEN. For this study, the researchers created an online survey and distributed a link to the survey to HPEN consumers and caregivers via social media. Respondents were asked to report their experience with symptoms such as grief, anxiety, fatigue, appetite changes, sleep disruptions and inability to cope, as well as duration of symptoms. They were also asked if they were provided mental health support and resources by their medical team, and if they felt that such support should be part of coordinated care. One hundred eighty-four people responded (65% caregivers, 35% consumers). Of the respondents, 95% felt mental health support should be provided as part of comprehensive care for HPEN con-sumers; 55% indicated they experienced six or more symptoms that could be indicative of a mental health disorder; 29% indicated their symptoms began at diagnosis and 50% indicated their symptoms have

been ongoing throughout their illness; 76% of caregivers and 72% of consumers did not have any type of mental health support offered by their practitioner or clinical team; 53% sought professional help for their symptoms, and of those, 61% were self-referred while 39% were referred by their medical team. Only 33% of respondents reported having a consumer advocate provided by their home infusion company, and of those respondents, 55% received resources from their consumer advocate informing them of the possibility of mental/emotional issues. The study concluded that symptoms of mental/emotional disorders may be common among HPEN consumers and their caregivers, as suggested by prior research. Further, this, paired with the fact that 76% of caregivers and 72% of consumers did not have mental health support offered to them, indicates a need that is not being met. The researchers note that the data highlights the importance of integrating mental health support into comprehensive care for HPEN consumers and their caregivers, and indicates the importance of offering mental health support and resources throughout treatment and therapy.

Ethanol Lock Efficacy and Associated Complications in Children with Intestinal FailureEthan A. Mezoff, MD, Cincinnati Children’s Hospital, Ohio Prophylactic ethanol lock therapy (ELT) reduces central line–asso-ciated bloodstream infections (CLABSIs) in children with intestinal failure. However, the risk of associated complications is unclear. For this study, patient demographics, CLABSI events, and line complica-tions for thirty patients on ELT from 2010–2013 were extracted from an intestinal rehabilitation registry. Infection and complication rates when on and off ELT were compared. The study results are as follows: CLABSIs when on and off ELT were 3.1 and 5.5 per 1000 catheter days, respectively (P < .015). Overall complication rates were similar in both groups. In those patients who experienced a complication, the complication rates on ELT compared with time off ELT were significantly lower (P < .003). Line perfora-tion or breakage rates declined significantly when on ELT, from 1.8 to 1.53 per 1000 catheter days (P < .006). Line occlusion rates also decreased on ELT, from 0.6 to 0.3 per 1000 catheter days (P = .056). Infecting organisms were not different on and off ELT, and patients experienced a similar number of polymicrobial infections on or off therapy. Klebsiella pneumonia was the most common infecting organ-ism in both groups. The researchers concluded that ELT use reduces both CLABSI and central line complication rates in children with intestinal failure, and that these results underscore the safety and efficacy of ELT use in this population.

Central Line Associated Infection and Blood Drawing Practices in an Adult Home Parenteral Nutrition (HPN) Population with Tunneled CathetersMarianne Opilla, RN, CNSC, Nutrishare, Inc., California One significant complication of HPN is central line associated bloodstream infection (CLABSI). Periodic blood draws for laboratory monitoring are required for safe management of HPN, and may be collected from the central venous catheter (CVC) or by venipuncture.

Camp Scholarship Winners The Oley Tim Weaver Camp Scholarship was established in 2014 with support from Fresenius Kabi USA. Summer camp can be a very positive experience for the young people in our community. This scholarship helps cover the cost of getting them to and from camp (i.e., airfare or mileage, lodging, and food). Congratulations to the two winners for 2015: Nicholas Seggerman, who will be at-tending Mount Hood Kiwanis Camp, and Thomas J. Perez, who will be attending Center for Courageous Kids. We hope you’ll consider applying next year!


Conference News

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The Kyle Noble Scholarship winner will be announced next issue.

The CVC is usually chosen for blood draws when there is poor venous access, needle phobia, pain with venipuncture, or for patient convenience. The aim of this study was to compare CLABSI rates between CVC and peripheral vein (PV) blood sampling, and to correlate infection rates associated with the person performing the CVC blood draw. For this study, retrospective data on adult home PN patients with tunneled CVCs was collected from one home infusion pharmacy. Data on tunneled CVC days and corresponding CLABSIs was collected for the period January 2005 to December 2013, as well as demographic data and the number of infusion days per week. The minimum num-ber of tunneled CVC days in the study was 730. CLABSI incidents were defined as presence of infection symptoms and positive blood cultures by peripheral and/or CVC sample. Positive blood cultures for the same organism within 30 days were counted as the same infection episode. A total of 108 patients were studied; 68 had blood drawn by PV and 40 had blood drawn from the CVC. The CVC group was further divided into four categories based on the person performing the blood collection: self, clinic/MD staff, home health nurse, or family caregiver. Groups were compared for CLABSI per 1000 CVC days. The study results are as follows: The average age of the study group was 58 years, 69% were female, 70% had a diagnosis of short bowel syndrome, and 80% infused HPN 6–7 days per week. There were a total of 278,635 tunneled CVC days with 210 infections at an overall CLABSI rate of 0.75/1000 CVC days. The PV group had 118 infec-tions in 181,650 CVC days with a rate of 0.65/1000 days, compared to the CVC group with 92 infections in 96,985 CVC days at 0.95/1000 days. It should be noted that in both groups some patients experienced multiple infections while others remained infection free. Of the CVC group, CLABSI rates per 1000 days based on the person performing the blood collection were as follows: self (13 patients), 0.37 CLABSI/1000 days; clinic/MD office (11 patients), 0.62 CLABSI/1000 days; home health nurse (10 patients), 1.38 CLABSI/1000 days; caregiver (6 patients), 2.57 CLABSI/1000 days. The researchers concluded that there was a clinically significant increase in CLABSI when blood was drawn from the CVC compared to PV, and of the subset of patients with CVC draws, the group drawing their own blood had the lowest incidence of infection and family caregiver blood draws had the highest. The HPN patient is the guardian of his or her CVC and appears to be the most meticulous with their own care. Patients should carefully scrutinize catheter care techniques when anyone manipulates their CVC, and voice concern when uncomfortable with technique. Ongoing education and review of aseptic technique is vital for HPN patients, health care providers, and family caregivers who work with CVCs. It is recognized that CLABSI is a complex complication and other risk factors may have contributed to this cohort’s infection rate, but this data indicates that blood drawing practices should be part of a total CLABSI incidence assessment for HPN patients. More investigation is needed to identify strategies to reduce CLABSI in the HPN population. ¶


Conference News

Thanks for Supporting the 2015 Oley Conference!Many thanks to the following companies and individuals for their gener-ous contributions.

2015 Oley AwardsBioScrip; Coram CVS/specialty infusion services; Nutrishare, Inc.; ThriveRx. Program: New York Press & Graphics. Volunteers: Jackson Bishop; Kiley Bishop; Sophie Guidi; Sydney Guidi; Rachel Walsh.

Ambassador Workshop/DinnerShire

Badges BioScrip

BreakfastTuesday: Option Care

Child Care Nutrishare, Inc. Volunteers: Jackson Bishop; Kiley Bishop; Maddie Bryda; Nick Butler; Kaitlin Coleman; Nicholas Coleman; Sophie Guidi; Sydney Guidi; Connor Hall; Grace Hamilton; Tyler Hanrahan; Haley Har-rington; Ron Metzger; Sarah Metzger; Marjorie Quinn; Skylar Riccardi; Denise Richardson; Aiyana Stephens; Guiliana Valenti; Rachel Walsh.

Conference ProgramCoram CVS/specialty infusion services

Elevator WrapNutrishare, Inc.

Emergency Medical SupportCoram CVS/specialty infusion services

Exhibit Hall Score CardAMT; BioScrip; Coram CVS/specialty infusion services; CORPAK MedSystems; Covidien; Halyard Health; Home Solutions; Nestlé Health Science; Nutrishare Canada; Option Care; ThriveRx

ExhibitorsApplied Medical Technology, Inc (AMT); AxelaCare; B. Braun Medical Inc.; Baxter Healthcare; BioScrip Infusion Services; Boston Scientific; Cook Medical; Coram CVS/specialty infusion services; CORPAK MedSystems; Covidien; Fresenius Kabi; Functional Formularies; Halyard Health; Home Solutions; Nestlé Health Science; Nutrishare, Inc; Nutrishare Canada; Option Care; Real Food Blends; Shire; ThriveRx; Xeridiem

FacultyPenny L. Allen, RD, CNSC; Marcia Boatwright, RN, CRNI; Bettemarie Bond; Rick Davis; Mark DeLegge, MD; Terry Edwards; Gunnar Esiason; Rachel Ewell; Madalyn George-Thiemann, RN, CNS; Ruth Germani; Brenda L. Gray, PharmD, BCNSP, CNSC, PRS, CVAA; Kathleen M. Gura, PharmD, BCNSP, FASHP, FPPAG, FASPEN; Lillian Harvey-Banchik, MD, FACS, CNSC; Marybeth Hollinger, RN, MSN; Lyn Howard, MB, FRCP; Ryan Hurt, MD, PhD; Maria Karimbakas, RD, CNSC; Darlene G. Kelly, MD, PhD; Jasmine Khamvongsa; Mark G. Klang, MS, RPH, BCNSP, PhD; Heidi Martin-Coleman, RN; Kevn McNamara, PharmD, CNSC, PRS, CVAA; Michael Medwar; Ethan A. Mezoff, MD; Ann

Michalek, MD; Nick Morano; Reid Nishikawa, PharmD, BCNSP, FCSHP; Susan Joy Olson, RN; Ann Marie Parry, RN, CRNI, VA-BC, RN; Dean T. Parry, RPh; Craig Petersen, RD, CNSC; Deborah Pfister, MS, RD, CNSC; Fred Reuning; Trish Skiendziel, RD, LD, CNSC; Richard Smith; Emma Tillman, PharmD, PhD; Pam Wagner, RD, LD, CNSC; Ann Weaver; Donna Yadrich, MPA, CCRP

General Conference SupportDale & Martha Delano; New York Press & Graphics; Jean Poormon; David & Carolyn Rowland. Volunteers: Cody Bakkila; Sophie Guidi; Sydney Guidi; Haley Harrington; Ellen Iead; Harlan Johnson; Ron Metzger; David Rowland; Marion Winkler, PhD, RD, LDN, CNSC, FASPEN; Mary Wooten.

Golf OutingJane Balint, MD; Coram CVS/specialty infusion services; Decillion; Option Care. Coordinators: Beth Deley; Mike Deley; Kenneth Ford. Volunteers: Jackson Bishop; Kiley Bishop; Ellen Iead; Ron Metzger; Marjorie Quinn; Guiliana Valenti; Marion Winkler, PhD, RD, LDN, CNSC, FASPEN.

HomePN Research PrizeNutrishare, Inc.

Hotel Room KeysCoram CVS/specialty infusion services

In Loving MemoryVolunteers: Gail & Chuck Brenenstuhl; Darlene Kelly, MD, PhD

Jammin’ JammiesAbbott Nutrition. DJ: Ray Altrock. Volunteers: Jackson Bishop; John Bishop; Kiley Bishop; Stephanie Bishop; Maddie Bryda; Kim Butler; Nick Butler; Sophie Guidi; Sydney Guidi; Connor Hall; Tyler Hanra-han; Marjorie Quinn; Skylar Riccardi; Aiyana Stephens.

Non-Profit & Family Business TablesAmerican Society for Parenteral & Enteral Nutrition (A.S.P.E.N.); Dietitians in Nutrition Support, Academy of Nutrition and Dietetics; Global Enteral Device Supplier Association (GEDSA); Gus Gear; MitoAction; SBS Cure Project; SBS Foundation; ZAYAZ Inc.

PhotographyKim Butler

PicnicFresenius Kabi USA. Entertainment: Al & Kathy Bain. Donated ice cream: Ben & Jerry’s.

Registration BagsNutrishare, Inc.

Registration BrochureSBS Foundation

Rehydration StationThriveRx. Donated supplies: DripDrop; Jinas Brothers.


Conference News

is a breeze...Life

© 2015 BioScrip, Inc. All rights reserved.

Call us to find out more

844.213.8446or visit bioscrip.com

BioScrip’s home parenteral and enteral nutrition program is specially designed to fit your life in the most convenient way possible. For 30 years, we have been delivering clinical excellence in nutrition support for any age and any lifestyle. With over 70 locations nationwide and our extensive payor relationships, we can be there to provide the quality care you deserve so you can focus on living your life.

Our mission is to enhance the lives of those we care for each day.

Silent AuctionThank you to everyone who donated or bid on items; together we raised $3,000! Volunteers: Jackson Bishop; Kiley Bishop; Stephanie Bishop; Sophie Guidi; Sydney Guidi; Haley Harrington.

Speaker SupportAxelaCare; Albany Medical Center; Baxter Healthcare; BioScrip; Boston Children’s Hospital; Clinical Pharmacy Partners; Coram CVS/specialty infusion services; GEDSA; Mayo Clinic; MitoAction; National Home Infusion Association; Nestlé Health Science; North Shore University; Nutrishare, Inc.; Option Care; Reimbursement Concepts, Inc.; Sutter Medical Group; ThriveRx, Inc.; Transporation Security Administration; University of Kansas; University of Tennessee Health Science Center

Travel Scholarships for ConsumersShire; SBS Foundation; Esther Ann Brown Adler Memorial Scholarship; Jarol Boan, MD, MPH; Melissa Chaney Memorial Fund; Friends of Robin Lang Memorial Travel Fund; Bruce F. Groeber Family; Carol Ireton-Jones, PhD, RD, LD, CNSC, FASPEN, FAND; Carol & Jack Leibee; Janet Platt & Christopher Hlatky

Tube Feeding WorkshopSponsored in part by Nestlé Health Science

Videotaping of ConferenceShire

WalkathonAMT; Baxter Healthcare; BioScrip; Boston Scientific; Coram CVS/specialty infusion services; Fresenius Kabi USA; Home Solutions; Option Care; ThriveRx. Thank you to everyone who walked or sup-ported a walker. Volunteers: Janis Bariteau; Laura Ellis, PhD, RD; Regina Huang; Ryan Huang.

Youth ActivityTuesday: Option Care. Volunteers: Maddie Bryda; Mark Colella; Kaitlin Coleman; Grace Hamilton; Noreen Luszcz; Dickon Platt; Jane Reinard. ¶

Kiley Bishop, Maddie Bryda, and Skylar Riccardi are some of the many volunteers who worked with kids at the conference.

Contributor News


Donor News

Conference, from pg. 1Join Us in Thanking Our Corporate Partners Please join the Oley Foundation in thanking our most recent cor-porate contributors. To read about other Oley partners, visit www.oley.org/donorinfo.html.

Nutrishare Nutrishare celebrates its twenty-five year birthday next year! Focusing solely on home TPN patient care throughout the country, and now Canada. It is proud to be a partner of the Oley Foundation. Learn more at www.nutrishare.com.

Boston Scientific Boston Scientific is dedicated to transforming patient lives by developing diagnostic and therapeutic devices that support less invasive, more efficient procedures for a variety of GI conditions. Through innovation and partnership, it is advancing clinical research, supporting education programs, and helping health care institutions deliver high quality health care while managing costs.

Halyard Health Halyard Health Your Source for Enteral Feeding says it delivers clini-cal products and remarkable service to improve tube users’ well-being. According to the company, its MIC-KEY tubes are the most trusted and studied low-profile feeding tubes and give pediatric, children and adults freedom and mobility. Its “all-in-one” GJ-tubes eliminate the second procedure. Found out more at www.mic-key.com.

Abbott Nutrition Abbott Nutrition is one of the world’s leading authorities in science-based nutrition for all stages of life. Explore its portfolio of products, including Jevity, Vital, PediaSure Peptide and EleCare, to help patients grow and achieve greater well-being. Visit www.AbbottNutrition.com to find product information, patient education materials, clinical research papers, and more.

Option Care Option Care is a leading provider of home infusion services. It has a staff of more than 1,700 clinical experts and provides comprehensive support to treat a broad range of acute and chronic conditions. Option Care provides service through its ninety infusion pharmacies and one hundred alternate treatment sites nationwide.

Applied Medical Technology Applied Medical Technology, Inc. (AMT) is a global leader and manufacturer of enteral feeding devices and accessories. Its products include the MiniONE® line of low-profile balloon, non-balloon, and capsule non-balloon buttons, the AMT G-JET® low-profile gastric-jejunal enteral tube, and the AMT Bridle™ and Micro Bridle™ Nasal Tube Retaining Systems.

Nutrishare Canada In collaboration with Nutrishare Inc. owners Tom Diamantidis and Rod Okamoto, Sahar Whelan and Souha Mourad became part of a new standard of excellence in TPN care in Canada. The company writes, “quality care for travelling patients, sharing of resources, and expertise across the border is the first of its kind.”

coming into the week. The information provided was meaningful, the opportunities to connect with other consumers, as well as clinicians and manufacturers, were priceless, and I feel like my life has already improved for the better (and I felt like it was pretty good to begin with so it’s a true blessing).” We couldn’t have done this—with over 350 participants—without the help of many volunteers and sponsors (see pages 12–13). See you next year in California! ¶

Creativity Fuels RenewalOley member Pamela Schepis finds peace and healing in both painting and writing. Pam writes, “My painting has helped me in ways that therapists and doctors couldn't…. No matter the medium, art therapy presents an opportunity for clarity and a catharsis of sorts.”

Good times, learning and sharing marked the 30th Annual Oley Consumer/Clinician Conference. Watch for more photos at www.oley.org and for details as they emerge about the 2016 conference to be held July 5–9 in Newport Beach, California.

Contributor News

Oley Corporate Partners

The following companies provide over one-half of the funds needed to support Oley programs. Corporate relationships

also strengthen our educational and outreach efforts. We are grateful for their continued interest and strong

commitment.

PLATINUM LEVEL PARTNERS ($70,000)

BioScrip, Inc.

GOLD MEDALLION PARTNERS ($50,000)

Coram CVS/specialty infusion services

ThriveRx

SILVER CIRCLE PARTNERS ($30,000)

Nutrishare, Inc.

Shire

BRONZE STAR PARTNERS ($20,000)

Baxter Healthcare

Boston Scientific

Covidien

Fresenius Kabi USA

Halyard Health, Inc.

BENEFACTOR LEVEL PARTNERS ($10,000)

Abbott Nutrition

Nestlé Health Science

Option Care

Teleflex Foundation

PATRON LEVEL PARTNERS ($5,000)

Applied Medical Technology, Inc.

Nutrishare Canada

Thank You!

Notable Gifts from IndividualsAmong the many contributions from individuals received at any given time, there are always several dedicated to those who have inspired the donor. We share this list of honorees below. A complete list of the contributions received in 2015 will be published in the March/April 2016 issue. We are grateful for the following gifts received from May 7 to June 26, 2015:

In memory of: Jacques Lamar Alexander; Pamela Prince; Ellen Spaulding

In Honor of: Danielle, “my Inspire friend”; eighteen years on HPN; Mary Kunz’s birthday; sixteen years on HPEN; and the “best brother in the whole world,” Jim Wittmann

Matching Gifts: GE Foundation

Fundraisers: iGive online shopping

Thank you for all gifts and the kind comments we receive throughout the year. Your support overwhelms us and continues to be a source of inspiration.

Join the Oley Horizon Society Many thanks to those who have arranged a planned gift to ensure continuing support for HPEN consumers and their families. Learn how you can make a difference at (800) 776-OLEY.

Felice Austin Jane Balint, MD John Balint, MD

Joan BishopGinger Bolinger

Pat Brown, RN, CNSNFaye Clements, RN, BS

Katherine CotterJim CowanRick Davis

Ann & Paul DeBarbieri David & Sheila DeKoldDale & Martha Delano

Tom Diamantidis, PharmDGail Egan, MS, ANP

Selma EhrenpreisHerb & Joy Emich

Jerry Fickle Don FreemanLinda Gold

Linda GravensteinDeborah Groeber

The Groeber FamilyValerie Gyurko, RN

Alfred HaasShirley HellerAlicia Hoelle

Jeff & Rose HoelleLyn Howard, MD

William HoytPortia & Wallace Hutton

Kishore Iyer, MDDoris R. Johnson

Darlene Kelly, MD, PhD, FACP Family of Shirley Klein

Jim Lacy, RN, BSN, CRNI Robin Lang

Hubert MaidenLaura Matarese, PhD, RD, LDN,

CNSC, FADA, FASPENKathleen McInnesMichael MedwarMeredith NelsonNancy Nicholson

Rodney Okamoto, RPh, & Paula Okamoto

Kay OldenburgHarold & Rose Orland

Judy Peterson, MS, RNClemens PietznerBeverly PromiselAbraham RichWendy Rivner

Roslyn & Eric Scheib DahlSusan & Jeffrey Schesnol

Doug Seidner, MD, FACG, CNSP Judi Smith

Steve SwensenCheryl Thompson, PhD, RD, CNSC, & Gregory A. Thompson, MD, MSc

Cathy TokarzEleanor & Walter WilsonMarion & Larry Winkler

James WittmannPatty & Darrell Woods

Rosaline Ann & William Wu


Donor News

☎☎ NON-PROFIT ORG.U.S. POSTAGE

PAIDPERMIT NO. 687

ALBANY, N.Y.

LifelineLetterThe Oley Foundation43 New Scotland Ave, MC-28 Albany Medical CenterAlbany, NY 12208

Are You Missing Out? If Oley doesn’t have your email address, you’re missing conference news, event invitations, HPEN FDA Alerts, and other timely updates. Remedy this today: email [email protected].

2015 Oley Calendar

August 2–8: HPN Awareness Week

September 19: Oley regional conference, Seattle, WA **TENTATIVE **

September 26–29: Oley exhibit at Association for Vascular Access meeting, Dallas, TX

July 5–9, 2016: 31st Annual Oley Consumer/Clinician Conference, Newport Beach, CA

For updates on the regional conference or if you are able to help at one of the Oley exhibits listed above, please contact Cathy at [email protected] or (518) 262-5079/(800) 776-6539.

Board Spotlight Peggi Guenter, PhD, RN, joined the Oley Board of Directors in the fall of 2014. She brings a great deal of experience and knowledge in the field of home parenteral and enteral nutrition (HPEN) with her to the board. Currently, in her position as Senior Director of Clinical Practice, Quality, and Advocacy for the American Society for Parenteral and Enteral Nutri-tion (A.S.P.E.N.), Dr. Guenter oversees the development of standards, guidelines, and safe practices for nutrition support, and advocacy efforts for profes-sionals and patients. She served as lead author for the Joint Commission Journal on Quality and Patient Safety position pa-per on enteral misconnections published in 2008. Dr. Guenter is well known in the field of nutrition support as a clinical nurse specialist, researcher, and author of over one hundred peer-reviewed abstracts, journal articles, book chapters, and books. She was previously editor-in-chief of Nutrition in Clinical Practice.

Peggi Guenter, PhD, RN

Celebrate HPN Awareness Week!

August 2–8, 2015

Documents

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