- Meet Consumers/Patients
|2005 Oley Award and Scholarship Winners|
LifelineLetter Annual Award
Bettemarie Bond has been an Oley Foundation Regional Coordinator (RC) since October of 1992. Her goals in becoming an RC included helping people on HEN and HPN understand they can live their lives on these therapies. She has guided Oley members in such matters as living successfully in a campus dorm while on HPEN, drawing from her experience in going to college to become a pediatric occupational therapist. Her positive perspective, kindness, generosity, and caring are the qualities that have been cited as what makes her unique and special. She reaches out to others in similar situations, offering her “can do” attitude as an example of what can be achieved while on therapy. She helped set up a program for teens and young adults with special health care needs at The Children’s Hospital of Pennsylvania, where she works hooked up to her HPN — always leading by example. We are very proud and pleased that Bettemarie was selected as the recipient of the 2005 LifelineLetter Award!
Oley Foundation Young Adult of the Year
Sponsored by Pediatric Services of America
Zachary Juhlmann is an exceptionally sunny, optimistic 13 year old boy, who smiles often and thinks positively despite a multitude of health issues and some hard knocks no one should have to deal with. His road became rocky at 5 weeks old, and eventually mitochondrial cytopathy was determined to be the cause of his challenges. He has gradually lost the ability to eat, then to be fed by J-tube, so now he is wholly dependent on TPN. Additionally, he requires a continuous cardiac drip and two other infusions. His biggest loss, though, has been his younger brother Sam, who succumbed to the same diagnosis this past year. Zachary was a wonderful model to Sammy, who was also completely dependent on TPN for most of his 7 years and 9 months. Zachary taught Sam in word and action that being on TPN was just the way it was and that did not mean life should not be lived. They were “best brothers,” shared a room, and did everything together. Zachary is fiercely independent, and determined when he started TPN full time that “I am never going to get better, and never going to get off TPN, so I better learn how to give myself my meds and TPN; because I don’t want you to come to college with me, and I am definitely growing up and going to college.” To know you will never get better at the age of 13 is quite a burden to carry. Zachary carries this burden with grace, while doing his homework, going to robotics club, playing piano, and playing with friends. When his class studies nutrition, Zachary shares how his therapies work, helping his classmates understand nutrition support. Zachary’s mom Anne states, “His hope, despite the incredible reality he lives with, and his love of life, are inspirational and humbling to those around him. He is the most courageous, resilient person I know.” We are proud and honored to award Zachary Juhlmann with the Young Adult of the Year Award.
Alyssa Douglas, Natalie Eacrett, Adam LaVoie, Kyle Noble, Sean Rawlings, Marrissa Vanalsteine
Celebration of Life Award
In honor of Coram Healthcare
Over 1 million vertical feet of skiing, a 23.4 miles hike across the Grand Canyon in one day, a trip to New Zealand and another around the country, and walking 25 kilometers at the first Oley Foundation walk-a-thon – is how Rick Davis celebrates life. He has found it to be very precious, surviving a serious stroke that deprived him of swallowing anything, including his own saliva, in December of 2000. Rick was the CEO of Salt Lake City Convention and Visitors Bureau for 16 years; then one year before the Olympic Games he had worked so hard to bring there, Rick found himself sidelined, at first unable to walk, talk, or eat. He set to work and began the long journey to recovery – first walking a hall, then a block, then a mile. Through perseverance Rick worked to regain all his abilities in just this fashion. What was not to be recovered was his ability to eat, so he put his energies into making his feeding therapy work for him, and found the resources to make that happen through the Oley Foundation. He now works to bring hope to others similarly challenged, reaching out through newsletters like ours, city magazine articles, and professional meetings — wherever he feels his story will touch and benefit someone. True to form, he is working to bring Oley’s annual conference next year to Salt Lake City — once a salesman! But what he sells now is hope, perseverance and inspiration — and we will be the ones to benefit. It is a great honor to award Rick Davis the Celebration of Life Award.
Shannon Bullied-Curran, Rebecca Carnes, Nina Marie Marino, Diane Rhodes, Jacqueline Swann, Jennifer Thiesse
Lenore Heaphey Grassroots Education Award
Donna Noble and the Mighty Medical Miracles
Donna Noble is a great advocate for children using nutrition support therapies. She has worked hard to bring support group meetings, as well as fun programs and fundraisers to the families in their Mighty Medical Miracles (M3) group. Over the last year, the bonds of this group were tested when Donna’s son Kyle suffered a major sepsis incident, and the daughter of Michelle Christenson, another founding M3 Regional Coordinator, underwent a multivisceral transplant. This group continues to reach out to people in their own area and beyond. Given the very challenging times Donna and Michelle have had this year, the nomination is actually made for the entire M3 group, as other members like Mitzi Goldsmith and Jennifer Welday have shouldered many responsibilities in an effort to help their friends and sustain their community. These families are a wonderful example of how strength can be found in numbers, and shared joys are that much more precious. We are very proud to award the Mighty Medical Miracles the 2005 Lenore Heaphey Award for Grassroots Education.
June Bodden and the Oley/Tampa Support Group; Jim Cowan/Roberta Gelle – NEO Oley Support Group; Kathleen McInnes/Ann Weaver - The Chicago Pumpers
Nan Couts Award for the Ultimate Volunteer
Sponsored by Judy Peterson, RN, MS
Jane Balint, MD
We are proud and very pleased to announce that Jane Balint, MD, a Pediatric Gastroenterologist at Children’s Hospital in Columbus, Ohio, has been selected to receive the Nan Couts Ultimate Volunteer Award. This award is for a nutrition support clinician that goes above and beyond to bring the best of information and care to their patients. The nominations for this award contained numerous examples of why Dr. Balint should receive it. Included in this list were: connecting patients and families to the Oley Foundation and the local M3 family group; attending local meetings, leading other clinicians to volunteer by her example; purchasing tickets for their local events and giving them to homePEN families who could not afford to pay for them; and participation in developing a weekend camp for homePEN kids.
Dr. Balint works to locate new research and therapy information for her patients, and ensures each child gets to be a child first, a patient second. A retired nurse familiar with Dr. Balint’s work offers that she “exemplifies the very best in medicine – cutting edge clinician, and eloquent advocate.” Additionally, our national homePEN community benefits from Dr. Balint’s service on the Oley Foundation Board. Please join us in congratulating Dr. Balint!