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The knowledge, friendships, and support I received by attending the Oley annual conference was absolutely wonderful! I traveled to the meeting in Saratoga Springs, New York, with my nurse and service dog, Zev, from Fort Lauderdale, Florida. At the conference, I met Rose Wu, a wom-an with whom I have spoken on the phone and have been Facebook friends with for years, but had never met. We both have the same disease and found much comfort and excitement in finally getting to meet each other. In addition, I met another woman on enteral feeding from Atlanta, Georgia, who I continue to keep in touch with and to see a few times a year through lobbying together for digestive diseases in Washington, D.C.
LifelineLetterLiving with home parenteral and/or enteral nutrition (HPEN)March/april 2016
What’s Inside:
Grant Enables Digestive Disorder Research
Page 2
Tube TalkPage 3
Summer CampsPage 4
Nutrition and YouPage 5
Donor NewsPages 6–11
Oley CalendarPage 12
CNW 2016Page 12
Help along the way
Vial Flip Caps, cont. pg. 2 ☛
Oley Conference Registration Packet
Inside!
Vial Flip CapsExtract from post on Infusion Nurse Blog, 2/3/2016, reprinted with permission. (See infusionnurse.org for the complete posting.)
Q: I was always told back when I was a nurs-ing student, that if you’ve just removed the flip cap from a vial, the vial rubber port is sterile and does not need to be disinfected prior to access. So I just insert the syringe to withdraw the medication. For vials already opened, I do swab with alcohol prior to use. Should I be swabbing the vial rubber port even if I have just removed the flip cap covering? (signed: an old nurse but not as old as Florence)
A: Please know that you are not the only one who has been under the impression that the pop-off caps (or flip cap) on vials keep the vial diaphragm (rubber port) sterile. And as such, when the cap is popped off, many nurses do not disinfect the diaphragm before inserting the needle to withdraw
the medication. Sad to say there are still many nurses and other healthcare providers who believe this as true.
Since you asked, here’s the answer.
•TheAssociationofPractitionersinIn-fection Control and Epidemiology (APIC) states in its position paper entitled “Safe Injection, Infusion and Medication Vial Practices in Healthcare”: Cleanse the ac-cess diaphragm of vials using friction and a sterile 70% isopropyl alcohol, ethyl alcohol, iodophor, or other approved antiseptic swab. Allow the diaphragm to dry before inserting any device into the vial.*
•InstituteforSafeMedicationPractices(ISMP) in its “Safe Practice Guidelines for Adult IV Push Medications” publication
explains: The “pop-off” vial caps from manufacturers are considered “dust covers” and are not intended to maintain sterility of the vial diaphragm or access point.
Friendships Grow at Oley ConferenceLynn Wolfson, Oley Ambassador
Lynn relaxing with Rose and Bill Wu, and Zev.
Friendships Grow, cont. pg. 2 ☛
Your Voice on Capitol HillJoy McVey Hugick, Oley Ambassador Oley members play an important role in the public policy process, whether we’re describing the consumer experience to legislators drafting new laws or explaining how changes in regulations or standards will impact our lives to regulators who are charged with implementing laws once they’re passed. One way Oley members advocate for home parenteral and enteral nutrition (HPEN) therapies is through the Digestive Disease National Coalition (DDNC), which is a non-profit organization that focuses on improving public policy related to, and increasing awareness about,
Part of the Oley team lobbying at DDNC, fall 2015.
Capitol Hill, cont. pg. 4 ☛
Sample Vial with Flip Cap
Medical Update
2 — LifelineLetter • (518) 262-5079/(800) 776-6539 March/April 2016
Vial Flip Caps, from pg. 1
The grant will help develop a cellular therapy for the
treatment of nerve disorders of the digestive system.
LifelineLetterMarch/April 2016
Volume XXXVII, No. 2
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
Editor, LifelineLetter; Director, Community Engagement:Lisa Crosby Metzger
Communications & Development Director: Roslyn Dahl
Administrative Assistant: Cathy Harrington
Executive Assistant: Andrea Guidi
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; Rex Speerhas, RPh, BCNSP, Secretary; Lynn Anderson; Debbie Fox, MS, RD, LD; 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.
Thus, the diaphragm must always be disinfected after removing the cap of a new vial. **
And while we are talking about “vials”…about the open vials you mentioned—please keep these APIC recommendations in mind.
•Alwaysfollowthemanufacturer’sinstruc-tions for storage and use.
•Neverpoolorcombineleftovercontentsof vials for later use.
•Dateopenedmultidosevialstoreflectdateopened and/or date of expiration.
•Inspectvialsanddiscardifsterilityhasbeen,or is thought to be compromised. Examine the vial for any particulate matter, discoloration or turbidity. If present, do not use and discard immediately.
*Source: www.premiersafetyinstitute.org/wp-content/uploads/APIC-SafeInjections-final.pdf
**Source: www.ismp.org/Tools/guidelines/ivsummitpush/ivpushmedguidelines.pdf ) ¶
The conference sessions were very infor-mative. I learned how to better take care of myself and how to advocate better. In addi-tion, there were roundtable sessions where we were able to share instances with other patients who have also encountered similar situations. It was so nice to find other people who truly understand what it is like not to be able to eat. The social activities were very enjoyable. They provided another opportunity to meet other people from around the country with chronic illnesses and to discuss our successes. These friendships have helped me become the strong and confident woman I am today. I no longer feel victimized as a patient. I have friends who truly understand the difficulties of having a chronic disease and not to be able to eat. We are able to support each other in good and bad times. I am proud to say that I am now an Oley Ambassador, encouraging other patients on tube feeding to take care of their medical needs and to live life to the fullest. ¶
Friendships Grow, from pg. 1
Tracy Grikscheit, MD, of the Saban Research Institute of Children’s Hospital Los Angeles, recently received a $7.1 million grant from the California Institute of Regenerative Medicine Translational Research program to develop a cellular therapy for the treatment of nerve disorders of the digestive system. These disorders, called enteric neuropa-thies, include degen-erative neuromuscular conditions as well as those caused by a deficient or missing nerve supply to the intestines. Currently, in many cases the only treatment is removing segments of intestine that do not have a properly formed nervous system. “Our goal is to develop an ‘off the shelf ’ cellular therapy to treat enteric neuropathies before patients require surgery or to rescue patients who still have symptoms following surgery,” said Dr. Grikscheit. Working with human induced pluripotent cells (iPS) that have the ability to develop into many human cell types, Dr. Grikscheit
proposes to generate nerve cells from “super-donor” iPS cell lines that are HLA-matched to a large portion of the population. Because these cells would match many patients, Dr. Grikscheit hopes to reduce or remove the requirement for immunosuppressive drugs
that are often required for transplantation. This cellular treat-ment, called advanced superdonor cellular en-teric neuropathy therapy (ASCENT), could re-place absent or diseased
components of the enteric nervous system—the cause of medical conditions such as Hirschsprung’s disease. The work will include collaboration with scientists at Cedars Sinai Medical Center, University of Michigan, and Cincinnati Children’s Hospital. Some of Dr. Grikscheit’s earlier research is featured in an article in the January/February 2015 LifelineLetter (see “Tissue-engineered Small Intestine: A Proposed Future Treatment for Short Bowel Syndrome”).
Grant Enables Disgestive Disorder Research
Volume XXXVII, No. 2 (518) 262-5079/(800) 776-6539 • LifelineLetter — 3
Tube Feeding Tips
Tube TalkSend your tips, questions, and thoughts about tube feeding (enteral nutrition) to [email protected]. Information shared in this column represents the experience of the individual and should not imply endorsement by Oley. The Foundation strongly encourages readers to discuss any suggestions with their clinician before making any changes in their care.
APPLIED MEDICAL TECHNOLOGY, INC.
Innovating. Educating. Changing Lives.
Connect To Learn More
Check Out The All New www.AppliedMedical.net
Your one stop resource for enteral feeding education
Prepared With Transitional Adapters800 869 7382
Tube Holder Makes Feeding Easier My father, “Buckwheat,” needed a PEG feeding tube because of ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) bulbar onset. As ALS robbed him of the strength in his hands, he was unable to feed himself. After many online searches, I was frustrated that there wasn’t a product that fit his need, so I decided I would build him a one-off feeding tube holder. I came up with “The Buckwheat” that was a single-hand operation and he was able to keep his independence. The Buckwheat keeps the syringe securely connected to the feeding tube [or exten-sion set], so there are no leaks or hand cramps from holding them together. It comes in two sizes: to hold a 60 mL syringe or a 140 mL syringe. Proceeds from the sale of every Buckwheat go to covering the overhead costs of running a charity bike ride (ALS Bike Trek MN) that I started after my father passed. Since I started the trek in 2010, we have raised over $640K for ALS research.
—Justin Rumley, [email protected] Buckwheat is available for $69.99 (includes shipping within the United States) from www.feedingtubeholder.com or (515) 201-5327.
Milk Frother Blends Crushed Meds In a blog on his site, Justin also shares this good tip: After crushing his father’s medi-cations, they would use a milk frother to blend the crushed pills with water. They bought an inexpensive frother from IKEA. But be careful what you crush! For information on crushing medications and a link to the Institute for Safe Medication Practices’ (ISMP) “Do Not Crush” list, see “Drug Administration through a Feeding Tube,” by J. Boullata, PharmD, RPh, BCNSP (Sept/Oct 2011 LifelineLetter) and “Tips from the Plumber’s Helper: Liquid Medications,” by Mark Klang, MS, RPh, BCNSP, PhD (Nov/Dec 2015 LifelineLetter). If you don’t have access to the Internet, please call the Oley Foundation office at (518) 262-5079/(800) 776-6539 for a copy of these articles.
When Susan’s husband had to travel unexpectedly, she was able to feed herself using the Buckwheat.
Oley Advocacy
4 — LifelineLetter • (518) 262-5079/(800) 776-6539 March/April 2016
digestive diseases. Established in 1978, DDNC includes patient and professional organizations. Last October, Oley was represented by several of its ambassadors, members, and staff at DDNC’s first-ever Fall Public Policy Forum in Washington, D.C. The fall forum provided an opportunity for targeted and strategic outreach to congressional members on key health com-mittees or with an interest in health care issues and medical research. Thirty patient/consumer advocates, health care providers, profes-sional society representatives, and industry members assembled to network and discuss legislative and policy issues of interest to the digestive disease community. We received advocacy training and broke into teams with complementary priorities to develop strategies for conducting effective congressional visits. We then swarmed Capitol Hill to meet with and educate congressional members and their staff on issues such as The Medicare Home Infusion Site of Care Act (S. 275/H.R. 605), The Functional GI and Motility Disorders Research Enhancement Act (H.R. 2311), funding for the National Institutes of Health (NIH), and other relevant topics. It was an exciting day to be on the Hill, as fiscal year (FY) 2016 appropriation bills were being considered and the new Speaker of the House was being selected. Even more exciting was building relation-ships with legislators and their staff by providing patient/consumer perspectives about what it’s like to live on HPEN and how their deci-sions impact Oley members’ lives.Effecting Change The impact of these meetings have already been realized in two very tangible ways. First, Congress passed a consolidated appropriations bill for FY 2016 that included funding NIH at $32 billion, an increase of $2 billion above FY 2015 and the largest increase to their budget in twelve years. Second, after one of our groups met with the legislative director for Congressman Keith Rothfus (R-PA-12), Mr. Rothfus became a co-sponsor of The Functional GI and Motility Disorders
Research Enhancement Act. Both of these actions demonstrate how valuable advocacy efforts can be. We can make a difference!Spring into Public Policy DDNC hosted its 26th Annual Spring Public Policy Forum in March in Washington, D.C. One hundred fifteen participants, includ-ing nearly forty patient/consumer advocates, were placed into teams by geographic region and visited one-hundred congressional offices spanning twenty-five states. Again, Oley was well represented. This year’s theme, “The Value of Patient Engagement in Quality Care,” was emphasized through the legislative priorities highlighted and the messages presented to the groups before the teams dispersed to visit the Hill. Oley Ambassador Lynn Wolfson was invited to share her story of living with Hirschsprung’s disease and doing advocacy work. This was a meaningful experience and Oley participants plan to attend future DDNC policy forums. Have your voice heard to help improve outcomes for the digestive disease community by participating in future DDNC events. For more information, see www.ddnc.org.Using Your Voice Locally If you’re not inclined to travel to D.C. or aren’t impacted by digestive diseases, your voice is still very important. We are united by HPEN therapy, regardless of our diagnoses, and we all face challenges regard-ing access to care and availability of treatment options. Participating in Oley’s advocacy efforts is a great opportunity to have our voices heard and allows us to play an integral role in the public policy process. You can meet with your members of Congress in their field or district offices and get to know their staff. It’s helpful to have those relationships, especially in the future when you’re asking for their support on legislation, or a regulatory or personal issue. You may also participate in stakeholder meetings to provide the patient/consumer perspective via the Internet or phone when an event is taking place in Washington, D.C., or elsewhere. If you are interested in participat-ing in Oley’s advocacy efforts, check the website and Facebook page regularly; updates are posted as policy initiatives arise. ¶
Capitol Hill, from pg. 1
Summer Camp Youth who rely on home parenteral and/or enteral nutrition (HPEN) have several options when it comes to summer camps! Camp offers a safe opportunity for children to gain independence and for you to have some respite. To help offset the cost of getting there, apply for an Oley Tim Weaver Camp Scholarship at www.oley.org. This scholarship, spon-sored by Fresenius Kabi USA, will cover travel expenses (i.e., food, lodging, and transportation) incurred up to $1,000. The following camps have run pro-grams that accept youth on HPEN in the past. You might also check NeedyMeds.org and Serious Fun Children’s Network website (see camps marked with an asterisk) for additional camp listings. Camps: Center for Courageous Kids, Scottsville, KY; Camp Chihopi, Children’s Hospital of Pittsburgh; Double H. Ranch, Lake Luzerne, NY*; Painted Turtle, Lake Hughes, CA*; Roundup River Ranch, Gypsum, CO*; Victory Junction, Randleman, NC*; Camp Boggy Creek, Eustis, FL*; Hole in the Wall Gang, Ashford, CT*.
Volume XXXVII, No. 2 (518) 262-5079/(800) 776-6539 • LifelineLetter — 5
Medical Update
Nutrition and YouThe best thing about being a teacher is the students. While teaching a graduate course, one student sent me a copy of an essay that is appropriate for this column. Meet Jordan Scott. Her desire is to help others with cystic fibrosis learn how to eat well—and she really knows! —Carol Ireton-Jones, PhD, RD, LD, CNSC, FASPEN, FAND
Cystic Fibrosis and Nutrition IssuesJordan Scott, Dietetic Intern, Nutritional Sciences and Dietetics, Texas Tech University
I have always been a “foodie.” Living with cystic fibrosis (CF) means my life basically revolves around food (and enzymes) anyway. So when I realized I could take my passion for food and combine it with my passion for staying healthy with CF, I jumped at the opportunity. If you have CF or someone you love has CF, then you probably know that the registered dietitian nutritionist (RDN) is a very important member of the CF care team. It is the RDN’s job to under-stand CF patients’ dietary needs and concerns while empowering them to eat well to live well. It’s hard dealing with a chronic, invisible illness, so I want to share with you just a few of the les-sons I have learned on my journey to becoming an RDN. 1. It Is OK to Rest I’ve never let CF stand in the way of living a normal life; however, I can recall many times in college where I pushed myself to the point of complete and total exhaustion. My strong work ethic started to affect my health because I was pushing myself too hard. I was so determined not to let CF stand in the way of a normal life that I had yet to realize that I was the one standing in my way by not taking care of my body. I had to learn that it is OK to take a break and to rest so I can be my best self. 2. We Shouldn’t Eat Whatever We Want Yes, a person with CF should eat a high-calorie, high-fat, high-protein diet. But does this mean that you need to eat cookies and brownies all day, every day? No, of course not. It is important to add whole grains, fruits, vegetables, and dairy to your diet. Over the years, I’ve learned how to healthfully add calories to the healthy foods I love, as well as eat my favorite desserts in moderation. Talk to your RDN about healthy ways to add calories to your meals and snacks, and don’t forget your enzymes! Also, coupling a healthy diet with regular exercise on a weekly basis keeps my lungs strong—not to mention, it makes me feel good! 3. Tube Feeding Does Not Equal Failure Two years ago, I started to lose weight rather than gain it. Every CF clinic visit, I had somehow lost a few more pounds. Eventually, my dietitian told me that if I did not start gaining weight, we would need to start talking about the possibility of a feeding tube. As someone who was studying how to eat right, I had always seen a feeding tube as a symbol of failure. I told myself that if I couldn’t gain weight, then I was a failure. After graduating college with my bachelor’s degree, I spent the entire summer doing my best to gain weight. I was determined not to disappoint myself. Coincidentally, I was also taking a graduate class online about the use of feeding tubes. During that class, I was given the opportunity to reach out to the CF community for one of my assignments. I wanted to know more about how people with CF feel about their own feeding tubes.
I read testimonial after testimonial. Not one person expressed regret about getting a feeding tube. After completing the class, I realized that maybe it wouldn’t be the end of the world if I had to get one. On my next clinic visit, I went in with an open mind. Much to my chagrin, I had lost two more pounds—after doing everything I could
to gain weight. I was frustrated and disappointed, but I knew what I had to do. After talking with my doctor and my RDN, it was settled—a feeding tube was on the horizon for me. Six months later, I had gained fifteen pounds and weighed more than I had ever weighed in my life! I have now become a walking testimonial.
The most important thing I have learned is that having a feeding tube does not mean I have failed. It has only made me stronger as I continue to fight off this disease and the challenges it presents me with each day. The journey of becoming an RDN is one of the hardest roads I have ever had to take, but it has also been the most rewarding. I have learned so much about myself, my body, and this disease. It has also allowed me to pursue my passion for helping others.
Reviewed by Carol Ireton-Jones, PhD, RD, LD, CNSC, FASPEN, FAND; Laura Matarese, PhD, RDN, LDN, FADA, FASPEN, CNSC; Marion Winkler, PhD, RD, LDN, CNSC, FASPEN; and Debbie Fox, MS, RD, LD.
Having a feeding tube does not mean I have failed. It has
only made me stronger.
Contributor News
6 — LifelineLetter • (518) 262-5079/(800) 776-6539 March/April 2016
Donor News
I Generous Gifts Without Bounds IEstate of Wendy Rivner: $100,000+Estate of Doris Johnson: $50,000+Lillian Harvey-Banchik, MD, in
memory of Homer H. Harvey: $10,000+
Anonymous, in memory of Dell Oliver: $5,000+
Jack and Carol Leibee: $5,000+Steven and Leah Atkinson: $3,500+
Ambassadors ($2,000+)Geoffrey O. BurneyDianne and Rick DavisDarlene Kelly, MD, PhD***
President’s Circle ($1,000–$1,999)Jane Balint, MD Abby Brogan Paul DeBarbieri Dale and Martha Delano, includes
matching gift from the GE Foundation Richard E. DillonJerry Fickle Joanne K. Hilferty Nancy and Peter Kudan, in memory of
Shirley, Arnold, and Fred Klein Judith Peterson, MS, RN Janet Platt and Christopher Hlatky Dr. Douglas Prince
Benefactors ($500–$999)Robert and Laura Andolina, in honor
of Julie Andolina
Thank You for Your Support in 2015!The following list represents everyone who contributed toward Oley’s efforts in 2015. We also want to thank those who are not listed below,
Jon and Susan Becker Barbara and Tim Blanchard, in loving
honor of Jim Wittmann, the best brother in the world
Jarol Boan, MD Lynda and Tom Bosworth, includes gifts
in honor of all of us and in memory of Ellen Spaulding
Carol and John Broviac, MD Frona Brown Drs. Daniel and Kathleen Dietel, in
honor of Jackson Merrill Dietel The Bruce Groeber Family, includes
gift in memory of Dr. Maurice Shils Jim Lacy, RN, BSN, CRNIChristina Noland Steve and Edithe Swensen John Wesley, MD, in memory of Susan
Herman
Sponsors ($250–$499)John Andolina Susanne and David Appel, in honor of
Rebecca and Daniel Appel John DeBiasio, in honor of Mike
Brilliantes Rebecca EdwardsJames Ervin, in memory of Judith R.
Ervin, RN**Amanda Fleckenstein Mark and Jill Johnke, MBA, RD Kathy Mannino David McGee Eli and Joan** Medwar, includes gift in
honor of Michael Medwar
Lisa*** and Ron Metzger, in honor of Dr. Lyn Howard, in memory of Sandy Lacey
Carol Rees Parrish, MS, RD Lynn and Kurt Patton Preston and Barbara Pumphrey David and Carolyn Rowland, includes
in-kind gift Karl Schten, in honor of the Erik
Schten familyMary and Douglas L. Seidner, MD Valerie Sorensen, in memory of Donald
SorensenEzra Steiger, MD Brian and Marty Sweeney Santhi and Kanaka Vege, in honor of
Dr. Darlene Kelly*** Robert and Patti Warrington Michael and Ann Weaver, in honor
of the ThriveRx Team; includes matching gift from FM Global
William and Kimberly Yanavitch
Patrons ($100–$249)Linda Abel Douglas Agar, in memory of Wendy
Agar Elizabeth Allen AmazonSmileHelenLu Anderson, in memory of
Walter Carlson AnonymousAnonymousAnonymousAnonymous, in honor of 16 years on
HPENAnonymous, in honor of Lynda
BosworthFelice Austin**, in memory of all we
lost in 2015 Jim and Jackie Bain Heather Barley Raymond Benge, Jr. The Staff at BioScrip Infusion
Services, in honor of all HPEN patients
Samuel and Mary Bishop Elizabeth Bond, RN** and FamilyChuck Breaux, Jr., in honor of J. T.
ShearrowNeil and Marjorie Brenner Margaret BrinsleyJean D. BrownStanley Caulder Michael Christenson Vincenzo and Pam CirinoSteve Cohen** Sarah Crim Patricia Cronk John W. Crowdis
Dean and Linda Crowley, MS, RD, CDN, CNSC, in memory of Lesley W. Noyes, Jr.; includes matching gift from the GE Foundation
John DawkinsMarcia Denenholz** Rita DiDino James and Suzanne Douglas, in honor of
Tanner Shuman,12 years off of HPN Marilyn Eason and Forbes Leland Terry Edwards* Brittany Ehrick Helen Eidem, in memory of Charlie
Eidem Herb and Joan Emich Christopher and Meg FigdoreArt Friedman, in honor of Todd Friedman Todd Friedman Mary Gergely Amelia Getz Shannon Goldwater Stuart Gordon, in memory of Irmagail
GordonSophia Gutherz Ronald Hannebohn George and Marsha Hanover, in honor
of Darlene Kelly, MD*** Lyn Howard, MB, FRCP, *** includes
gift in honor of the hat Lynn Wolfson** made for her
Shirley Huang, MD*Bob Hydorn, in memory of Joyce
Hydorn Arthur Jodoin David and Laurie Ann Johnson Harlan Johnson*Susanne Karacki, in memory of Larry
Karacki Ronna Katz Barbara Kapuscinska Kelly, MD Mark Klang, MS, RPh, BCNSP, PhD,
in memory of Pat Brown, RN, MSN, CNSC
Grace and Stewart KrakoverJill and Jake Krautkremer, includes gift
in honor of Harlan Johnson* Richard, Elaine, Dick, and Jenny Lahn Chris and Larissa Lang, in memory of
Robin Lang Cara Larimer, RD Sandra LemiseBeth Lyman, RN Jane Manderville Tom Markert, in memory of Charles
Schmidt Marcia Martin, in memory of Eleanor
Orkis Brian McCall Howard and Lyn McDaniel Michael Medwar
when three or more gifts are given in honor of, or in memory of, an individual or special event, we’ve created a separate list which can be
Volume XXXVII, No. 2 (518) 262-5079/(800) 776-6539 • LifelineLetter — 7
Donor News
“I 100% recommend ThriveRx… where I don’t
feel like a number.”– Shelly
Thriving on Home Nutrition Support
1-888-6-THRIVE (888-684-7483) or [email protected]
www.thriverx.net
yet have supported Oley by volunteering their time and talents. Note:
Russell Merritt, MD, PhD Ted Murawski, Jr. Alyce Newton, MS, RD, CNSC, LDNAnna Nowobilski-Vasilios, PharmD,
MBA, FASHP, CNSC, BCNSP1 Janne and Barbara Olson Lou and Martha Pacilio Paul and Donna Peot, in honor of Ryan’s
16 years of HPN Ellen Pierce, MD, and Chris Ericksen, in
memory of Jeff Dutton, Paula South-wick and Bob Sweet, and in gratitude to Todd Friedman
Joanne Platt** Jean Poormon Mary Ellen Quinn Laurie Reyen, RN, MN Charlene Riikonen, Cera Products, Inc. Arnold and Nancy Rome Stacye Rothmeyer, includes matching
gift from Bank of America Sharon Sakowitz, in honor of Arthur
Rosen and Mario Steinvurvel Kathleen Saylor, in memory of Pat
Brown, RN, MSN, CNSC Joan and Frank ScheibMark Schenker, in memory of Anna
Alesse Erik Schten, in honor of Dr. Lyn
Howard*** Vi Schultz, includes gift in memory of
Greg Tongol David S. Seres, MD Bob and Mary Smithers**Anthony Spensieni, in honor of Natalie
Wootten Josie Stone, RN, CPNP, CRNIMary Susan Thomas, RN, MSN Robert and Karyn Thomas T. Bryan TimsCathy Tokarz, in honor of Bettemarie
Bond** and family, Michael Medwar and family, Todd and Susan Freidman
Kathleen Tushinski, in honor of all the good work Oley does
Norberta Vosgerau, in honor of 22 years on HPEN
Mary Jo and Jeff Walch Sally and Phil Wallick Carolyn Wijnholds Lisa and Joel Winer Sheila Winfrey, in honor of BobbieJo’s
10 year transplant anniversary Rosaline** and Bill Wu Allan and Cheryl Yelner, includes
matching gift from JLL Community Connections
Sheryl Young Stephen Zardas
Supporters ($50–$99) Anonymous Anonymous AnonymousAnonymous, in memory of Chloe
Carlson Anonymous, in memory of Jim WeissPeggy Aschenbeck Mary C. Bateman Tom Behrendt Cynthia Biercevicz Dr. and Mrs. Gabriel Bitton, in honor
of Natalie RosenthalSamuel BongiovanoLynda Bosworth and Bonnie Resig, in
honor of the birth of Mabel Theodora and in memory of Sylvia Fields
Gail and Chuck Brenenstuhl Paul Burger Cindy Byrd Frank and Patricia Capuzzi Patricia Chamberlain Bert Crosby Christine and Arthur Dahl, in honor
of Roslyn Dahl*** Dave Delach Wade and Debbie Delisle The Downes Family, in memory of
Alisha Hoelle** Andrea Elyachar Danilo Escaro, MD Pam Essary William Fitzpatrick, Sr. Peggy Flavell, RN Cheryl Fleming, in memory of Don
Freeman Kathleen Florea Janelle and Delbert Fortin, in honor
of Jonathan Nelson Charlie Freeny Herb and Denise FreyDr. and Mrs. Edward Garber, Jr.Barry and Martha Ginsburg Iris Goldmacher, in memory of Howard
Goldmacher Deborah Groeber, in memory of
Bruce F. Groeber Linda and Colman GuldenBrenda Hansen Judith Hanson Pam and James HearnVivian Horne iGive.com Noah Jakub Stuart Kay, MD Janice Kobayaski, in memory of
Dorothy KellyJoseph and Patricia KochanskiMr. and Mrs. Gary Korber
Donors, cont. pg. 8 ☛
found on page 10.
8 — LifelineLetter • (518) 262-5079/(800) 776-6539 March/April 2016
Donor News
© 2015 BioScrip, Inc. All rights reserved.
Our mission is to enhance the lives of those we care for each day.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.
Call us to find out more
844.213.8446 or visit bioscrip.com
Ann LaBotz Don** and Sandra Lacey, in memory
of Don FreemanBrenda Leake, RN, ET, APN, CWOCNJie Li Naomi Liebman, in memory of
Sylvia Liebman Sarah MacDonald Rosalie Marable Diane Martino, in memory of Robert
Martino David Mathiasmeier Tiffany Matthews, RD Mary Bea and Roland May Lois Moran Jeffrey Phillips Bill and Thelma Pierce, in honor of
Dr. Ellen Pierce and Chris Ericksen’s wedding anniversary
Donna Porricelli Marjorie QuinnKaren L. Ramagnano, in memory of
Madalyn Goldfarb Hannah Richter, in memory of Andreas
Richter Karen Rieck, in memory of Gary Rieck Ronald Rosen Eloise Rubincam Thomas and Leslie Sanford Frank Sauk, in memory of Mary Friel Martha SaylesJolayne Service Dorothea ShawPatricia ShawEdward and Eileen SheperdThe Singh FamilyBarbara and Thomas Squadere Dr. and Mrs. Robert Steiner John Sullivon Carmen Taylor, in memory of Carl
“Skip” Taylor Enrica Thure, in memory of Gregorio
Tongol ThriveRx Team, in memory of Barbara
Clark, Isabella Daley, and James Parlier Roger and Kay Tims, in honor of Bryan
Tims’ 35 years on HPN Trinity Equipment, LLC Ralph Valenti and Jennifer Comi Brooke Wardrop Ronald and Cecilia Wathen Pam** and Ally Winter Doris Worthington Betty Zeller, in honor of Kim Zeller,
9 years on HPN
Contributors ($30–$49)Kathleen Allen, in honor of Mandy
Allen’s birthday Anonymous Anonymous Arthur R. Benanti Joan Bowling
Mrs. Laura Brigante Gene Costa Donald Culp, in honor of Frances Culp Linda Deane The Dodd Family Julie Fordney Paula Gaida, RNArlene Galbert, in honor of Lynda
Bosworth Virginia and Guadalupe Garcia, in
honor of Sean May’s 16th birthdayDiane Gardner Vibhuti Gill goodsearch.com/goodshop.com Mimi and Jack Halpern Michael and Pam Hayes Ruth Hora Martha Hsu Lisa Hunt Andy Jablonski Helga Johnson Steven Johnson Tina Kerrigan, MS, RDSusan Krantz, RD Linda Kropp Pauline KubizneDr. and Mrs. Samuel Laucks, II Jason LintonLouis and Sheryl Longobardi The Lopez Family Elizabeth Anne Mahoney, RNNora Medwar Laura Mentzer Pat Mielke Meredith Nelson Jennifer Patnode Colleen Plunkett Sarah Rausch Peggy Roth Carole Ryan, in honor of 16 years on HPEN The Scanzillo Family Agostino and Kathy SestitoMichael and Karen Smollen Mary Stickney Julie Strongson-Aldape Leonard and Joyce Thompson, in
memory of Sallie Simpson Mary Till Mary VanderKley
Friends (up to $30)Melissa Alexander, in memory of
Jacques Lamar AlexanderLiz Alger Anonymous AnonymousAnonymousAnonymous Anonymous, in honor of Alexander
Topping Joan Barnett Albert Barrocas, MD Laura Bartorelli
Donors, from pg. 7
Volume XXXVII, No. 2 (518) 262-5079/(800) 776-6539 • LifelineLetter — 9
Donor News
A new comprehensive online resource for patients and caregivers that makes
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A QUICK START GUIDE TO THE FIRST DAY AT HOME WITH A FEEDING TUBE
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AN EDUCATIONAL VIDEO SERIES
© 2016 Nestlé
GET CONNECTED TO
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...and more
Andrew Bateman Rose Bateman Leslie Bennet Shannon Bernardi Beth from Oley WalkathonAdele Bitowft, in honor of her 80th
birthday Bettemarie Bond**, in honor of S. W.
Hovey Jo Bordelon Dorothy Bouman Eileen Bowes Patricia Bratica Amy and Eric Bresse Jonathan Brodkin Duval Cantu Jessica Castillo Errol Childress Peggy Christ Gretchen DeKalb, in honor of Mary
Kunz’ birthday Jean R. Demichelli, in memory of
Josh ShapiroDaphne Derden-Willis Joan Doran Nancy Doran-Hite Stephanie Eastman, matching gift
from Baxter International Dwayne and Bridget Eckrote Laura Ellis, PhD, RD Robert and Joanne Epping Lisa Fairbairn Margot Falkner G. Ferreri Theresa Freeman Christine FritzingerNancy Garber, RD Dale, Jana, and Jay Gelman Gab Giminelli Ava Goldstein Joan Gordon Lucille Gordon Norman Gordon Stuart Green Helen Grimes Francesca Habeeb Michelle Hadley Carole Hadley-Gordon Christine Haines Claire Hamilton Cathy Harrington*** LuAnn Harris Daulton Heisey** Lillian Heisey Matthew Hill Michelle Hilton Bob and Jean Hittie Jeffrey and Tammy Hodder Trevor Humphrey Ronald and Noreen Iacobucci, in
memory of Joyce Hydorn Jeffrey Kaplan, in honor of 2 years on
HPEN
Charles and Kathryn Karnack Nancy Lafremiere The LaMora Family Dorothy Lewis Carol Mabardy Janice Mabardy Paulette Mabardy Philip and Anita Mabardy Craig, Shannon, and Alyssa
MacCormack Carolyn MacKinnon Cherie Malona Jean Martin, in memory of Pamela
Jenkins The Meltz Family Marcia Miller, in memory of Shirley
Klein Merilla Miller Bennett and Muriel Millstone Jeff Minton Mary Grace Nardoia Larry and Linda Neal David NewmanRobert Nichols, in honor of the
anonymous donor who graciously shipped enteral bags
Sue Nonemaker Donald Norton Susan Olson, RN Monica Perna, RD, LDN, CNSC Mr. and Mrs. Robert M. PollockVirginia Price Edna Priebe Kim PrimeKatha Quinn Michael Raffe, in honor of Aidan Raffe Jane Reinard, CNSC, MBA, RD, LDCarlene Renaud Bruce and Rebecca Richardson Ibis Rosado Jenna SalvucciMichele Salvucci Nelida Saulnier Carol Schaffer Mark and Marianne Sheely Jillian Sierra Catherine Smithers Bob and Ada Stankard Sandra Stauffer Brittney Thomason Livia Tisser, in honor of Danielle Luc,
a fellow Inspire member May To, RD Rolando Marrero Traba Jane and Ralph Travis Shirley Trimmer Janet Tufts, in honor of 18 years on HPN Heather Vallee Linda Waldmann Carol Walsh Alan and Marcia Weiss Michael Wenz
Donors, cont. pg. 10 ☛
10 — LifelineLetter • (518) 262-5079/(800) 776-6539 March/April 2016
Donor News
Martin and Lois Wienshienk Sibyl Wisch Jim and Gloria Wittmann Lynn Wolfson** Mary Wootten** and Family Warren Wright Donna Yadrich, MPA, CCRP Marguerite Zeller, PharmD Shirley L. Zionts Tammy Zoppa
In Honor of Sally BowersAnonymousMartha SaylesMary Stickney
In Honor of Mary Ellen CostaGene Costa Patricia CronkCarol Walsh
In Honor of Don YoungCathy Harrington***Lyn Howard, MB, FRCP***Lisa*** and Ron MetzgerVi Schultz
In Memory of Davria Cohen**Felice Austin**Margaret BrinsleyPaul BurgerFrank and Patricia CapuzziSteve Cohen**Sarah CrimMarilyn Eason and Forbes LelandHerb and Denise FreyChristine FritzingerDale, Jane, and Jay GelmanLucille GordonNorman GordonChristine HainesMimi and Jack HalpernRonald HannebohnPam and James HearnVivian HorneGrace and Stewart KrakoverRichard, Elaine, Dick, and Jenny
LahnEli and Joan Medwar**Michael MedwarLisa*** and Ron MetzgerBennett and Muriel MillstoneDavid NewmanMr. and Mrs. Robert M. PollockDonna PorricelliArnold and Nancy RomeEloise RubincamEdward and Eileen SheperdBob and Ada StankardJulie Strongson-AldapeLinda WaldmannRonald and Cecilia WathenAlan and Marcia Weiss
Sibyl WischLynn Wolfson**Shirley L. Zionts
In Memory of Ann DeBarbieriAnonymousJean D. BrownPaul DeBarbieriPauline KubizneBarbara and Thomas SquadereDr. and Mrs. Robert Steiner
In Memory of Mary PatnodeHarlan Johnson*Jill and Jake KrautkremerJennifer PatnodeCarol SchafferTrinity Equipment, LLC
In Memory of Pamela S. PrinceLinda AbelLiz AlgerHeather BarleySamuel BongiovanoDwayne and Bridget EckroteRobert and Joanne EppingDanilo Escaro, MDChristopher and Meg FigdoreAmanda FleckensteinJulie FordneyDr. and Mrs. Edward Garber, Jr.Bob and Jean HittieJoseph and Patricia KochanskiMr. and Mrs. Gary KorberDr. and Mrs. Samuel Laucks, IILarry and Linda NealSue NonemakerJanne and Barbara OlsonDr. Douglas PrinceDorothea ShawPatricia ShawBrian and Marty SweeneyJane and Ralph TravisShirley TrimmerSally and Phil WallickLisa and Joel WinerWilliam and Kimberly Yanavitch
In Memory of Felice “Papa” Sestito Cindy ByrdVincenzo and Pam CirinoRita DiDinoG. FerreriLaura MentzerAgostino and Kathy SestitoStephen Zardas
In-Kind GiftsBen & Jerry’sDecillion HealthcareDripDropJinas BrothersNew York Press and Graphics
Ray Altrock DJReimbursement ConceptsDavid RowlandVitamix
FundraisersAmazonSmileiGive.comgoodsearch.com/goodshop.comStaff of Baxter Healthcare, HPN
Awareness WeekStaff of BioScrip Infusion Services,
HPN Awareness WeekTeleflex Medical, event at Infusion
Nurses Society conferenceOley Walkathon Walkers: James
Bain; Leslie Bennet; Andrew Bodnar; the Bond family; Jo Bordelon; Gail and Chuck Bre-nenstuhl; Duval Cantu; Errol Childress; Rick Davis; Daphne Derden-Willis; Tiffany Dodd; Laura Ellis, PhD, RD; Paula Gaida, RN; Michelle Hadley; Carole Hadley-Gordon; Lillian Harvey-Banchik, MD; Pamela and Michael Hayes; Daulton Heisey; Lillian Heisey; Michelle Hilton; Tammy and Jeffrey Hod-der; Lisa Hunt; Andy Jablonski; Sandy and Don Lacey; Carol Leibee; Rachel, Jorge, and Ava Lopez; Sue MacKinnon; Eli Medwar; Michael Medwar; Al-yce Newton, MS, RD, CNSC, LDN; Susan Olson, RN; Monica Perna, RD, LDN, CNSC; Ke-Vaughn “KE” Plunkett; Marjorie Quinn; Blake and Jane Reinard, CNSC, MBA, RD, LD; David and Carolyn Rowland; Mark and Marianne Sheely; the Singh family; Bob Smithers; Catherine Smithers; Cathy Tokarz; Ally and Pam Winter; Jim and Gloria Wit-tmann; the Wootten family; Bill and Rosaline Wu; Donna Yadrich, MPA, CCRP; the Yoo/Huang family; and the Zoppa family
Matching GiftsBank of AmericaBaxter InternationalFM Global FoundationGE FoundationJLL Community Connections
* Oley Trustee** Oley Ambassador*** Oley Staff
Donors, from pg. 9
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 strong commitment.
PLATINUM LEVEL PARTNER ($70,000)
BioScrip, Inc.
GOLD MEDALLION PARTNER ($50,000)ThriveRx
SILVER CIRCLE PARTNERS ($30,000)
Coram CVS/specialty infusion services
Nutrishare, Inc.
Shire
BRONZE STAR PARTNERS ($20,000)
Baxter Healthcare
Boston Scientific
Fresenius Kabi USA
Halyard Health, Inc.
Medtronic
BENEFACTOR LEVEL PARTNERS ($10,000)
Abbott Nutrition
Nestlé Health Science
Option Care
Teleflex Foundation
PATRON LEVEL PARTNERS ($5,000)
Applied Medical Technology, Inc.
Apria Healthcare
AxelaCare
Cook Medical
Functional Formularies
Nutrishare Canada
Real Food Blends
Teleflex
Volume XXXVII, No. 2 (518) 262-5079/(800) 776-6539 • LifelineLetter — 11
Donor News
Thank You Corporate Partners! Please join the Oley Foundation in thanking our most recent corporate contributors. To read about other Oley partners, visit www.oley.org/donorinfo.html.
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.
Applied Medical Technology, Inc. Applied Medical Technology, Inc. (AMT) helped develop the PEG tube, and its founder co-invented the first low-profile feeding device. AMT continues to make innovative medical devices, including the AMT Bridle Nasal Tube Retaining System, the AMT MiniONE low-profile buttons and the new AMT G-JET low-profile G-J enteral tube.
Apria Healthcare Apria Healthcare is one of the nation’s leading providers of home respiratory services and certain medical equipment, including oxygen therapy, inhalation therapies, sleep apnea treatment, enteral nutrition, and negative pressure wound therapy. Apria owns and operates more than 370 locations throughout the United States and serves more than 1.8 million patients each year.
Notable Gifts from IndividualsAmong the individual contributions received, there are always several dedicated to those who have inspired the donor. We share this list of honorees below. A complete list of contributions received in 2015 can be found on pages 6 to 11. We are grateful for the following gifts received from October 17, 2015, to March 30, 2016:
In Memory of: Wendy Agar; all we lost in 2015; Pat Brown, RN, MSN, CNSC; Walter Carlson; Robert Wayne Carpenter; Davria Cohen; Colin Couch; Ann DeBarbieri; Charlie Eidem; Judith Ervin, RN; Mary Friel; Howard Goldmacher; Bruce F. Groeber; Homer M. Harvey; Susan Herman; Joyce Hydorn; Larry Ka-racki; Shirley, Arnold, and Fred Klein; Mary Ann Krautkremer; Sandra Lacey;
Robin Lang; Lesley W. Noyes, Jr.; Dell Oliver; Eleanor Orkis; Mary Patnode; Pamela Prince; Clayton Rein; Andreas Richter; Gary Rieck; Charles Schmidt; Felice Sestito; Sallie Simpson; Donald Sorensen; Gregorio Tongol; and Terry Williams
In Honor of: All of us!; all the good work Oley does; Mandy Allen’s birthday; Julie Andolina; the anonymous donor who so graciously shipped A. C. L. feeding bags; Rebecca and Daniel Appel; Salvatore Barrocas; Joan Bishop; BobbieJo’s 10 year transplant anniversary; Bettemarie Bond & family; Lynda Bosworth; Sally Bowers; Mary Ellen Costa for her continued courage; Frances Culp; Roslyn Dahl; Daniel DeHart; Feeding Tube Awareness Week; Todd and Susan Freidman; Theresa Grasso; Dr. Lyn Howard; Harlan Johnson; Dr. Darlene Kelly; Barbara Klingler; Sean May’s birthday; Michael Medwar and family; Jonathan Nelson; Ester Notrica; Dr. Ellen Pierce and Mr. Chris Erickson’s wedding anniversary; Aidan Raffe; Arthur Rosen; Natalie Rosenthal; the Erik Schten family; Rachel Schten; J. T. Shearrow; Tanner Shuman, twelve years off of HPN; sixteen years on HPEN; Dianne Sluder; Mario Steinvurvel; the ThriveRx Team; Bryan Tims’ thirty-five years on HPN; Alexander Topping; twenty-two years on HPEN; two years on HPEN; Natalie Wootten; Don Young; and Kim Zeller
Fundraiser: AxelaCare, booth activity at Clinical Nutrition Week
In-Kind Gifts: David Rowland; Vitamix
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.
☎☎ 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
2016 Oley CalendarMay 14–19, 2016: Oley exhibiting at Infusion Nurses Society conference, Fort Lauderdale, FL
May 18–20, 2016: Oley exhibiting at Michigan Association for Home Care conference, Acme, MI
July 5–9, 2016: Oley Annual Consumer/Clinician Confer-ence, Newport Beach, CA
August 7–13, 2016: HPN Awareness WeekSeptember 17: Oley Regional Conference (in conjunction with AVA meeting), Orlando, FL
September 16–19, 2016: Oley exhibit at Association for Vascular Access (AVA) conference, Orlando, FL
July 5–9, 2017: Oley Annual Consumer/Clinician Confer-ence, Old Greenwich, CT
For updates on Oley events or if you are able to help at one of the Oley exhibits, please contact Cathy at [email protected] or (518) 262-5079/(800) 776-6539.
Additional Meetings of InterestMay 21–24, 2016: Digestive Disease Week, San Diego, CAJune 15–18: Mitochondrial Medicine 2016 (United Mitochondrial Disease Foundation Symposium), Seattle, WAOctober 23: Loma Linda Patient/Family Day, Loma Linda, CAJune 28–July 1, 2017 (clinicians only): Congress of the Intestinal Rehabilitation and Transplant Association, New York, NY
See Oley Conference Registration Inside
Go to www.oley.org or call (518) 262-5079 for updates.
Nutrition Week Highlights In January, Oley staff attended Clinical Nutrition Week—the annual meeting of the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.)—where we learned about new trends and research. The keynote address, “The Cost of Safety” pre-sented by Dr. Debra Simmons and Dr. Meredith Kilgore, was a compelling discussion of the costs and value—measurement of and where cost and value intersect—of clinical safety improvements. At smaller sessions and roundtables, we learned more about blenderized diets, transitioning to adult care, skin care, and more. The Oley booth was busy with clinicians looking to find the latest news. Lyn Howard Advocacy Award At CNW, Oley member Linda Gravenstein was given A.S.P.E.N.’s Lyn Howard Nutrition Support Consumer Advocacy Award. For many years, Linda has advocated for her daughter, who has been on parenteral nutrition over twenty years, and in so doing, she has paved the way for other parents with kids on home nutrition support. Linda is also on the TSA’s Coalition for Travelers with Disabilities, and has been involved with efforts to raise awareness about the Medicare Home Infusion Site of Care Act. In receiving the award, Linda said, “I would like to thank Dr. Lyn Howard and the Oley Foundation for giving us and so many a pur-poseful life. I would also like to thank my daughter Megan for being my light and her fierce independence that allows me to share with others what we have learned in our journey.”
Linda Gravenstein
