Congratulations to the 2011 Oley Foundation Award Winners
Samantha Bye & Matisse
Reid, Oley Foundation Child of the Year
In Honor of ThriveRx, Oley Gold Medallion Partner
This year, we were pleased to present the Child of the Year Award to both Samantha (Sammi) Bye and Matisse Reid. Sammi and Matisse have each faced extraordinary challenges, particularly in the past year, and yet they continue to inspire others.
Samantha
Bye
Sammi, 14, is known for her sense of humor. “No matter how bad my day has been,” her friend Emily Koprucki writes, “she always makes me feel better. I can be venting away and all of a sudden she has me laughing! Samantha…seems to find something fun or good in every situation, no matter what.”
While Sammi’s health issues have led to more restrictions over the last few years, she keeps in touch with friends through phone calls and texting, and enjoys helping cook family dinners. “Although Sam cannot take in nutrition orally,” says Emily, “she loves to cook for her family....To me that takes amazing courage—I would be too tempted to taste things! But that’s just Sam. Nothing gets in her way.”
Emily’s mom, Sue, adds, “I vividly recall when...Emily had to go on gut rest for a few weeks. Sammi…was incredibly supportive, even from hundreds of miles away. She gave Em all sorts of ideas on how to make it through that time emotionally. Her sense of humor and practical attitude really helped Em get through those tough weeks that turned into months.”
Sammi “demonstrates many fine qualities as a student, but her tremendous courage and strength as a teenage girl amazes me the most,” says Sammi’s tutor, Courtney Watson. “She has daily obstacles that she overcomes and she does so with an upbeat and positive attitude without complaints.... I know that Sammi has taught me more about life over this past year than I could ever teach her.”
Matisse Reid
Matisse, 10, is from New
Zealand. She and her family moved to the Pittsburgh area several years ago to be
closer to a center with experience in HPEN management and intestinal
transplantation—surgery that could not be done in New Zealand
. In December 2010,
Matisse underwent an intestinal transplant. She is now experiencing life without
parenteral nutrition for the first time, although she is still on enteral
nutrition and sometimes requires IV hydration.
Those who’ve been to an Oley conference recently will easily recognize Matisse’s smile. She is quick to make friends and, with her mom, Jodee, serves as an “ambassadress” for both Oley and the New Zealand group Parenteral Nutrition–Down Under (PN-DU). Jodee is an Oley Regional Coordinator, as well as a member of PN-DU.
Brenda Dunn (see below), one of the founding members of PN-DU, says, “Matisse has been a great ambassadress, putting up with pain to attend a function so that fundraising—be it for a transplant support group or personal support—can occur. Prior to her transplant she visited other children on PN, happily explaining her extra ‘blings’ and tubings to teach the community what life is really about.”
Matisse is active in her school and once took on a project to collect extra Halloween candy to distribute to other children. She has always liked cooking, even when she couldn’t eat anything. Now she is cooking up a storm (visit her blog at matisseskitchen.blogspot.com). She recently made one hundred cupcakes to help raise funds for the Izzie’s Gifts of Hope Foundation!
Congratulations to Sammi and Matisse, and to the Nominees: Andrew Bodnar; Fahreen Mapara; Aleah Smith
Brenda
Dunn, LifelineLetter Annual Award
In Honor of Nutrishare, Inc., Oley Gold Medallion Partner
Matamata, New Zealand
The LifelineLetter
annual award is given to an HPEN consumer or caregiver, aged nine
teen or older,
who has demonstrated courage, perseverance, a positive attitude in dealing with
illness, and exceptional generosity in helping others in their struggle with
HPEN. Brenda Dunn is a wonderful example of these qualities.
Brenda lives in New Zealand, but her influence extends to HPEN consumers in the United States and elsewhere through the wonders of the Internet. Brenda is a real presence in online support groups (such as Yahoo groups) and on the fairly new Parenteral Nutrition-Down Under (PN-DU) Web site. Brenda is an Oley Regional Coordinator (a foreign affiliate) and one of the founders of PN-DU—a group Dr. Gil Hardy, Professor in Pharmaceutical Nutrition at the University of Auckland, calls “Oley’s ‘little sister’ support group.”
“She gives of her time and limited resources in a completely selfless way,” says Dr. Hardy, who is also active with PN-DU. Karen Winterbourn, who has known Brenda since 2009, says, “I have been amazed at Brenda’s passion and energy to bring about best practice and equality for all of us on HPN. Setting up PN-DU has been a great step forward in this endeavor…and she has been tireless in sharing regular and relevant research/medical information with us, pursuing system/government changes for our benefit, designing and creating practical aids for other consumers, and sometimes simply giving us a good therapeutic laugh or some great encouragement.”
Somehow, Brenda also finds time to tend to the many animals on her farm, and, until recently, to work as a nurse.
Congratulations Brenda, and to the Nominees: Fran Freeman; Kay Oldenburg; Jennifer Thiesse
James Rucks, Celebration of Life Award
In Honor of Apria Healthcare / Coram Specialty Infusion Services, Oley Gold Medallion Partner
The Celebration of Life
Award recognizes an HPEN consumer who lives life to the fullest. Thi
s year, we
were pleased to present the award to Jim Rucks. Jim and his wife, Jackie, enjoy
touring across the countryside on their Harley Davidson motorcycle. They tow
behind them a trailer that carries a cooler full of Jim’s HPN supplies. When
they are at home, Jim and Jackie run a home daycare center, where they care for
four of their grandsons, as well as other children.
Jim and his wife had two small children at home when, in 1985, surgery for a mesenteric infarction led to HPN therapy. Since 1985, Jim has worked as a limousine driver and a property manager, and flown civil air patrol search and rescue missions with the National Air Force Auxiliary. For the latter, Jim had to maintain his pilot’s license, which he acquired when he was in college, and comply with strict FAA regulations.
Soon after Jim’s initial surgery, he and Jackie packed up the kids for a road trip to California and the Grand Canyon. Since then, he and Jackie have been to Mexico several times and to Alaska. They have ridden their Harley to Yellowstone National Park and Wyoming, and enjoy weekend or day trips around northern Minnesota.
One of the dietitians who works with Jim, Jeanne Moe, RD, says, “He and his wife, Jackie, are remarkable. They take meticulous care, keep abreast of current medical knowledge, and consistently maintain a positive, forthright attitude....Jim is to be congratulated for his amazing perseverance, persistence, and upbeat attitude.”
Congratulations to Jim, and to the Nominees: Mariah Abercrombie; Marie Latta; Jennifer Thiesse
Sheila DeKold, Lenore Heaphey Award for Grassroots Education
Sponsored by Kimberly-Clark, Oley Benefactor Level Partner
Lenore Heaphey was hired
when the Oley Foundation was founded in 1983. She recognized the importance of
our Regional Coordinator (RC) volunteers as the “face of Oley” in differe
nt
areas. When Lenore left Oley to pursue a law degree, this award—which recognizes
an RC who has organized an outstanding information and/or education program in
the past year—was named in her honor.
This year the award was presented to Sheila DeKold, who has been an RC since 2003. Sheila is mother to David and Olivia. Olivia is on HPEN due to pseudo-obstruction. Fellow RC Patty Woods says, “Sheila is constantly reaching out to others who are new to HPEN throughout her community, either geographically or online….She has a way of encouraging new parents to continue living despite a new diagnosis or therapy.”
This spring, through Sheila’s efforts, several HPEN families—including the DeKolds—spent a weekend at the Center for Courageous Kids in Scottsville, KY. Patty notes, “This weekend gave families an opportunity to leave medical worries behind and just be a family, in a safe, camp setting with medical support available ‘just in case.’ Relationships were strengthened, friendships were formed, and support was fostered. Everyone came away with memories to last forever.”
Sheila also staffed an Oley exhibit at the annual meeting of the Society of Gastroenterology Nurses and Associates in Indianapolis in May. Oley representation at professional meetings is important, and staffing an Oley exhibit booth allows HPEN consumers/caregivers the opportunity to share their perspective with professionals in the HPEN field.
Congratulations and thanks to Sheila, and to the Nominees: Kathleen McInnes; Tammi Stillion; Linda Stroshine; Aliza Chana Zaleon
Laurie Reyen, RN, Nan Couts Award for the Ultimate Volunteer
Coordinated by Judy Peterson, RN, MS
Nan Couts volunteered
throughout her life and founded Grossmount Hospital in San Diego. She taught her
granddaughter Judy Peterson the meaning of volunteerism, beginning w
ith having
Judy help at a senior home when she was ten, which sparked Judy’s interest in
nursing. We are proud to honor clinicians in the HPEN or related field, who give
of themselves, with an award in Nan’s name.
This year, the award was presented to Laurie Reyen, RN. Laurie has been working with HPEN consumers for over twenty-five years. She has always been an active supporter of the Oley Foundation, speaking at Oley conferences and sharing Oley with her patients and colleagues. Laurie goes above and beyond in connecting UCLA patients to the Oley Foundation. In October 2010, Laurie was instrumental in organizing an Oley regional conference at the UCLA Medical Center—which was a great success—and in February 2011 spoke at the Oley regional conference in Vancouver, British Columbia.
Mariah Abercrombie, an HPN consumer who helped coordinate the conference at UCLA, says, “Laurie believes in the message that Oley shares. She believes that an educated patient is a happier, healthier patient. She understands the importance of one patient or parent meeting another who is experiencing the same life challenges they have.”
In addition to working with Oley, Laurie is active with the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) and the National Home Infusion Association (NHIA), as well as other professional organizations. She also helps provide medical care at the Painted Turtle Camp for children on HPEN.
Congratulations to Laurie, and to the Nominees: Faye Clements, RN, BS; Marcia Grandsko, RD; Jeffrey Randolph, MD; Ezra Steiger, MD; Marion Winkler, PhD, RD, CNSC
Nathan
Natale, Kyle R. Noble Scholarship
Coordinated by Richard & Donna Noble
Kyle R. Noble’s enthusiasm for life affected many positively, and he is remembered widely with affection. Kyle passed away in 2006 at the age of eight. In 2007, the Noble family established the Kyle R. Noble Scholarship to recognize others who share the admirable qualities for which he will be remembered. This year’s recipient, announced at the Oley conference in Minneapolis, is Nathan Natale.
Nathan, who graduated from high school in June, is described by a teacher as “one of the least intimidating and most approachable people in the school.” Nathan participated in chorus and student body government, while taking—and doing well in—a battery of challenging honors classes. Nathan is described as “extremely polite,” “encouraging to those around him,” and “quick in assisting a fellow student struggling with a concept.”
Nathan’s achievements are impressive, but they are made more remarkable by the challenges he has had to overcome—like missing fifty-two weeks of school when he was 15, after appendicitis and a subsequent blood clot in his mesenteric artery led to a jejunostomy (or J-tube), parenteral nutrition (PN), and dialysis (due to kidney failure).
Nathan, who is still on tube feedings, PN, and dialysis, will be attending Siena College in upstate New York. He is planning to major in biochemistry. “My ultimate goal has always been to become a veterinarian,” Nathan says. “I do not feel that my dreams have changed because of my appendicitis and subsequent surgery.” After all, he adds, “I already can understand quite a bit of the treatments veterinarians prescribe and how they work.”
Past Recipients:
Mariah Abercrombie, Kailee Brown, Alicia Hoelle, Chelsea Johnson
Winners of the 2011 Oley Foundation HomePN Research Prize
Sponsored by Nutrishare, Inc., Oley Gold Medallion Partner
The Oley Foundation HomePN Research Prize, sponsored by Nutrishare, Inc., was established in 2007 to encourage clinical studies focused on improving the quality of life for home PN consumers. At the annual conference, we were pleased to present this year’s awards to the following three researchers.
Parenteral Nutrition (PN) Outcomes of Patients with Short Bowel Syndrome after Discontinuing an Intestinal Growth Factor, Teduglutide
Charlene Compher, PhD,
RD, FADA, LDN
University of Pennsylvania School of Nursing, Philadelphia, PA
An intestinal growth factor, teduglutide, was tested in patients with PN-dependent short bowel syndrome in a phase III clinical trial for efficacy to reduce weekly PN volume. The study concludes that some patients may maintain or further decrease their PN after stopping teduglutide. Patients who sustained PN volume reductions at one year characteristically had longer colon length and colon in continuity, and experienced no significant reduction in BMI. It has not been evaluated if this response would be maintained for a longer time period, or in the context of a challenging clinical situation.
Central Vascular Access Device (CVAD) Infection Rates for Home Parenteral Nutrition (HPN) Patients
Melissa Leone, RN, BSN
Coram Specialty Infusion Services, Denver, CO
After collecting CVAD infection rates from several offices of a national home care infusion company, Leone found HPN patients experience higher CVAD infection rates than their non-PN counterparts (those with CVADs for therapies other than PN). This higher infection rate may support the additional expense of a more detailed catheter care protocol for these higher risk catheters. Leone also concluded that dwell times did not play a significant role in the rate of CVAD infection, but the number of CVAD lumens may play a role.
Relationship between Catheter Related Bloodstream Infection and Bathing Practices in Home Parenteral Nutrition (HPN) Population
Marianne Opilla, RN,
CNSC
Nutrishare, Inc., Midlothian, VA
A survey of bathing practices was conducted in a group of HPN consumers with a tunneled CVAD. A correlation was drawn between these practices and catheter-related bloodstream infection (CRBSI) rates. In this survey, 78 HPN patients confirmed they showered or tub bathed on a regular basis with a tunneled CVAD. The majority did not apply a protective covering to the CVAD during either type of bathing. The study concludes that both groups maintained acceptable CRBSI rates with either type of bathing practice. Adding a protective covering to the CVAD did not significantly impact CRBSI rates.
For more details on these
studies, the prize and an application form, please visit
www.oley.org/HomePN_Research.html.
LifelineLetter, July/Aug 2011