2010 Oley Awards and Scholarship Winners
LifelineLetter Annual Award
In Honor of Nutrishare Inc., Oley Golden Medallion Partner
The LifelineLetter Annual Award is given to a homePEN consumer or caregiver, aged nineteen or older, who has demonstrated courage, perseverance, a positive attitude in dealing with illness, and exceptional generosity in helping others in their struggle with homePEN. Tammi Stillion has demonstrated these qualities well, and we were pleased to present her with this year’s LifelineLetter Award at the annual conference.
Tammi has been on HPN since 2001, after surgery to remove a tumor left her with short bowel syndrome. Tammi and her husband, Rob, learned about the Oley Foundation not long after, and in 2009 they volunteered to manage the Oley Foundation’s Equipment-Supply Exchange. Their contribution has been invaluable. One person who talks to Tammi regularly through the exchange notes, “Through their own experiences, Tammi and Rob truly understand what it’s like to be on the other end of the phone. Tammi makes herself available, even if she may be otherwise busy or the dogs are begging for her attention. I find her story touching and her laugh infectious.” She continues, “For those who call, Tammi and Rob are more than volunteers, they are friends.”
“Tammi is an amazing person,” Rob writes. “She enjoys talking to other consumers [through the Equipment-Supply Exchange or Oley’s Toll-free line] and helping consumers with getting what they need. She will spend as much time as necessary on the phone with someone to get them every possible bit of information she can….While she is doing this she is on her HPN and still finds time for sewing and quilting.”
“I nominated Tammi for the LifelineLetter award,” Rob said recently, “after seeing her interact with other consumers on the telephone. When we took over the exchange, we didn’t know a lot about the program, or about tube feeding in general (Tammi is on HPN). But we have begun to learn that there is a lot to learn about tube feeding and there is a great need out there. It sometimes gets disheartening when we hear about people whose insurance won’t cover expenses or who have an extremely high deductible. But Tammi never gets down or upset. Instead, she does all she can to help the consumer. She has spent much time on the phone just talking about whatever the caller needs to talk about. I feel that is the true meaning of being a volunteer. Her dedication to the Equipment-Supply Exchange has spilled over to us being Regional Coordinators (RCs) and has allowed us to become even more involved with Oley.”
As RCs, Tammi and Rob are also active in a support group that meets in the Toledo, Ohio, area, and often volunteer to answer calls through Oley’s Toll-free Number program. This program allows homePEN consumers and/or caregivers to speak to another homePEN consumer/caregiver one on one, toll-free, anywhere, (almost) anytime (see page 5).
We are grateful for Tammi’s generosity and example. Congratulations!
Susan Agrawal, Pam Belmonte, Mark Jackson, Michele Juda, Sendy Perez, Mary Smithers, Linda Stroshine, Jim Wittmann
Oley Foundation Child of the Year Award
In Honor of ThriveRx, Oley Golden Medallion Partner
At the annual conference in Saratoga Springs this June, Tim Weaver was presented with the Child of the Year Award for his positive attitude in dealing with illness and home nutrition therapy, and the wonderful ability he has to inspire others. “Tim Weaver is a young man of great triumph who does not allow his physical limitations to overcome him. Rather, Tim approaches life with poise and determination. I have witnessed the vigor and passion with which Tim fights,” says a nurse who has worked closely with Tim. “He never ceases to amaze me with his uncanny ability to inspire.”
Tim was diagnosed with Hirschsprung’s disease when he was three days old and has been on nutrition support ever since. “While he has never experienced life without nutrition support,” says his mother, Ann Weaver, “he rarely, if ever, mourns for what he does not have or what life could have been.”
Tim plays tuba and guitar, and performs with his high school’s wind ensemble, brass ensemble, and jazz lab bands. He also participates in monthly meetings of the local ostomy association and runs a monthly raffle to raise funds for the Youth Rally, a camp for kids with ostomies. Tim has also worked with a counselor from Double H Ranch to organize a golf tournament; the Double H Ranch is a camp for children with chronic health issues. As a member of the Kids Advisory Board of Children’s Memorial Hospital, Tim attends monthly meetings and serves as an ambassador for the hospital at various functions.
Judy Smith, the nurse at Tim’s high school, notes, “Tim has a great sense of humor and is very easy going, witty, and pleasant. He has an uncanny ability to find the positive, humorous side of everything in the classroom.” A nurse from camp agrees, noting, “It astounds me the way Tim continually brightens campers’ days with his dry wit and consistent smile. His calm demeanor and ability to be comfortable in his own skin allow him to be a strong leader.”
We see all these qualities in Tim at our Oley gatherings, as well. Tim often attends the annual conference with his mother, who is active as an Oley Regional Coordinator in the Chicago area. Tim is willing to talk to others about his illness and therapy, and is a ready friend to other conference-goers. He has also participated in panels at the annual meeting of the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.), where he has shared the homePEN consumer’s perspective with clinicians. Congratulations, Tim!
Eleanor Brogan, Samantha Bye, Kassandra Delossantos, Aria Korda
Celebration of Life Award
In Honor of Coram Specialty Infusion Services, Oley Golden Medallion Partner
James (Jim) Wittmann
Jim Wittmann has been on home parenteral nutrition (HPN) for much of his adult life, though his trials with Crohn’s disease began in adolescence. “Jim was forced, because of serious Crohn’s disease, to deal with the challenges presented by an ileostomy and successive serious intestinal surgeries during his elementary, high school, and college years,” says Jim’s brother-in-law. Jim “chose not to withdraw into isolation,” he continues, “but rather chose to maintain, as best he could, a normal life. Jim has tackled camping, mountain climbing, hiking down and up the Grand Canyon, water skiing, snow skiing, and even sky diving.”
Jim is known for his extensive volunteer work and generosity. He has delivered meals for Meals on Wheels for twenty years and has served on their board of trustees. He is also very active in his church. On a less formal basis, Jim serves in his community by befriending all he meets. He drives his many friends to doctor’s appointments, community events, or the airport; when needed, he brings them food. Jim goes out of his way to visit people in hospitals, mental health facilities, and nursing homes. He gives generously of his time and himself to help others. He also gives generously of his resources. This year, Jim supported the Friends of Robin Lang Memorial Travel Fund, established to help a homePEN consumer attend Oley’s annual conference for the first time.
“Everyone has limitations and obstacles in their life,” says Jim. “Those obstacles or challenges can and should be used for opportunities to become stronger. We all have a duty to encourage each other in overcoming life’s hurdles.” After Jim received the Celebration of Life Award, his sister, Barbara Blanchard, commented, “Our whole family concurs: ‘He deserves it!!’ We have seen his life and been amazed at his service and thoughtfulness for others. By God’s sustaining and enabling grace, Jim is diligent, prayerful, wise, steady, and joyful, despite many trials.”
“My dad knows that his illness is something he has been given so his compassion and empathy for others would be greater,” added Jim’s daughter Sarah.
Gary Hoebelheinrich, who has known the Wittmann family for years, expresses Jim’s attitude well: “Whenever he was unable to fulfill his primary adult aspirations, such as completing a college degree or full-time employment [due to health issues], he merely changed course and established new goals in life. As a result, he has successfully parented two daughters, traveled and participated in recreational sports with extended family, logged thousands of hours in service to his church and community agencies, and finally, nurtured his creativity and generous spirit with a photography pastime that he can share with others.”
We were pleased to present Jim with the Celebration of Life Award at the annual conference. Congratulations, Jim!
Jameson Atkinson, Debbie Fox, Tina G. Jackson, Aria Korda, Jonathan Lockwood, Lauren Marie Moore, Eleanor Orkis, Mary Smithers, Tammi Stillion, Linda Stroshine, Tim Weaver, Steve Welch (aka “NM Husky”)
Lenore Heaphey Award for Grassroots Education
Sponsored by Kimberly-Clark, Oley Blue Ribbon Partner
Lenore Heaphey was hired when the Oley Foundation was founded in 1983. She brought with her many years of administrative experience and an unmatched amount of energy and enthusiasm. Lenore quickly recognized the importance of our Regional Coordinators as the “face of Oley” in different regions of the country. When Lenore left Oley to pursue a law degree, it seemed only fitting to name an award in honor of her outstanding contributions.
This year we were pleased to present the Lenore Heaphey Award for Grassroots Education to June Bodden. June has been an Oley Foundation Regional Coordinator (RC) since December 1993, and has touched many lives through this long stretch of time as an Oley volunteer. As an RC, June is very active in an Oley support group in Tampa, Florida. In 2008, this group celebrated their twentieth anniversary. Since 1988, June says, people “have come and gone to our meetings, and the encouragement and friendship have grown” (LifelineLetter, March/April 2008).
A member of this group notes, “June has always kept us up-to-date on goings on at Oley and in the world of HPEN. She organizes and conducts our quarterly meetings in Tampa and keeps us informed about the group’s members, and particularly when someone is experiencing a more serious problem than he or she already has. Her regular e-mail postings when someone is sick or hospitalized, or having a particular difficulty not only keep us informed, but show how much she cares about everyone, and how dedicated she is to her work.”
In 2009, the annual Oley conference was held in St. Pete’s Beach, Florida. June’s help in organizing the event was invaluable. June was instrumental in locating the site for the conference, pulling the group together to support the event, identifying speakers, getting home care companies involved, soliciting items for the silent auction, and more.
Thank you for your dedication, June., and for your contribution to the HPEN community. And congratulations!
Tara Smith, Tammi & Robert Stillion
Nan Couts Award for the Ultimate Volunteer
Coordinated by Judy Peterson
Gerry Hennies, RN III
Throughout her life, Nan Couts volunteered for many groups, including the Red Cross. She founded Grossmount Hospital in San Diego in the 1950s. Nan taught her granddaughter Judy Peterson the meaning of volunteerism, beginning with having Judy help out at a senior home when she was ten. Judy says this is when her interest in nursing began. We are proud to honor clinicians in the homePEN or related field who demonstrate willingness to give of themselves—beyond their regular work hours—with an award in Nan’s name.
At the annual conference, we were pleased to present the Nan Couts Award for the Ultimate Volunteer to Gerry Hennies, RN III. Gerry has been a pediatric nurse for over thirty years, and says she “always wanted to be a nurse,” since she was a young child. Gerry has worked at Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio, for the majority of her career, and has been involved with homePEN consumers since 1990.
“When I first began practicing in the hospital there was no home care,” Gerry says. “Tunneled central lines had not been around long and children who required parenteral nutrition lived in the hospital. Hospitals were not family friendly, siblings didn’t visit, there were no places for families to sleep or even shower. Several years later, when I met my first HPEN family, I realized these families were responsible for many things I wasn’t sure I could do, as a nurse. Shortly after this our pediatric hospital started its own home care company and I was afforded a unique opportunity to case manage HPEN families. This gave me such an advantage, I felt, to help every family I encountered be successful with HPEN. Seeing families as families, and not as patients, changed the entire thought process of how our team should practice.”
“It was in those first terrifying days [after a surgery left my child unexpectedly dependent on HPEN] that we met Gerry Hennies, who would become an invaluable resource in our family’s life,” says one of the parents with whom Gerry works. “She was pretty blunt in explaining what we had to learn before we could even think about taking our daughter home, but she was also our biggest supporter and cheerleader.” When it was time for their child to be discharged, the parents were excited but apprehensive. “That was a very lonely feeling,” says the mother, “but it was easier knowing Gerry was a phone call away and more than willing to answer our questions, address our concerns, and help us figure out the best way to provide care.”
Gerry currently works in the Intestinal Rehabilitation Center at Cincinnati Children’s, providing case management/nutrition support for these families. It is not unusual to see her at her desk long after the day has ended, returning phone calls to the families she serves. The Intestinal Rehabilitation Center, which also has an intestinal transplant program, sees families from all over the United States.
Faye Clements, RN, BS; Marcia Grandsko, RD, LD; Cheryl Thompson, PhD, RD, CNSD
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 and admiration. 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 Saratoga Springs, New York, is Chelsea Johnson.
Chelsea graduated from high school in Charlotte, North Carolina, this spring and is excited about entering university in the fall. “I am excited about living on campus and experiencing dorm life,” she says, “and have declared psychology as my major. I am not sure how I will cope with the snow, as the weather at school will be quite different than Charlotte’s mild winters, but I am really looking forward to all the upcoming changes in my life!”
Chelsea has been on HPN since she was six years old; she also has a G-tube and a J-tube to help alleviate symptoms associated with motility issues. “During my first ten years on HPN,” she says, ”I was hospitalized with several line infections, had 90 percent of my colon removed, and endured a variety of invasive tests. But throughout, I have always attended public school, have a close network of friends, and have maintained a high GPA in my coursework.”
In addition to her schoolwork and friends, Chelsea keeps busy by volunteering in her community. Chelsea is a member of the Family, Career and Community Leaders of America and has helped collect winter clothes for children in need. She also visits senior citizens at a local nursing home and helps with recreational activities there.
“The most positive lesson I have learned in dealing with chronic illness is that I can not only adapt to almost any setback, but I can excel!” says Chelsea. “My illness has made me view each day as a gift, to focus on the things I can control, and to turn challenges into opportunities.” Her goal is to become a therapist “to help others and to share my life lessons.”
“Chelsea has enriched the lives of those around her in many ways,” writes one of Chelsea’s high school teachers. She “finds a way to spread her optimism and cheer everywhere she goes. I have never met someone with the uncanny ability to make those around her laugh and smile so frequently.”
Mariah Abercrombie, Kailee Brown, Alicia Hoelle
2010 Nutrishare HomePN Research Prize Winners