- Meet Consumers/Patients
|2014 Oley Award and Scholarship Winners|
2014 Oley Awards and Scholarship Winners
Harlan Johnson & Mary Patnode
Sponsored by Nutrishare, Inc., Silver Circle Partner
Mary Patnode and Harlan Johnson
This year we recognize a husband and wife team, Mary Patnode and Harlan Johnson, as the LifelineLetter Award, HPN recipient. Mary has been described as "petite but a dynamo package with a big personality,” and Harlan as "Mary’s lighthouse, standing firm, a ray of positive light, and Mary’s ‘go to’ strength.”
Mary had Crohn’s disease and short bowel syndrome and had been a home parenteral nutrition (HPN) consumer for over thirty-two years. In an article she wrote for the Journal of the American Association for Vascular Access (2012), Mary noted that, thanks to HPN, she "was able to pursue a career, finish an advanced degree, work full time, buy a home, participate socially, get married, and enjoy a family that came complete…with children and grandchildren.” (Click here to read Mary’s article, posted with the permission of the Journal of the American Association for Vascular Access.)
Mary served as an Oley Ambassador (formerly Regional Coordinator) for almost thirty years. When she retired from her position as a psychologist in special education, she joined the Oley Board of Trustees as well. Retirement, Mary had said, meant "more time to give and choices to make about where to place my efforts. Serving on the Oley board will be an opportunity…to contribute to the supportive network that is so important to HPN consumers.” She joined the board in 2008 and became president in 2012. She continued to serve in this capacity until her death in April of this year.
Darlene Kelly, MD, states, "Mary was known for her sincere compassion and her conscientious organizational ability, and as one who seeks out the opinions of others, representing them without bias.” She brought these characteristics to her positions at Oley and contributed the much valued consumer perspective to the board. Mary has been an invaluable part of the Oley community.
Harlan was a source of boundless encouragement, love, and support for Mary throughout their twenty-two years of marriage. Oley Executive Director Joan Bishop says, "Harlan has been a rock of support for Mary, and through this support both personally as a caregiver and as husband of the Oley President, his contributions to our community are endless.” Harlan has assumed responsibility for various jobs at several annual Oley meetings and has helped Oley gain access to the team of a US senator from Minnesota in order to discuss drug shortages.
Mary and Harlan have truly enjoyed life to the fullest, spending time at their lake cabin, traveling, visiting with family and friends, enjoying their grandchildren, and playing cards with their lake neighbors. Mary and Harlan will continue to inspirit the Oley community with the positive strides they have made throughout the years.
Donna Noble, Lisa Phipps, Carla Root
Sponsored by Abbott Nutrition, Benefactor Level Partner
This year’s LifelineLetter Award, HEN goes to Carol Pelissier. A friend describes Carol as "never complaining.” Carol, she continues, "thinks of others before herself and no matter how difficult the challenges may get, she…always finds a way to get through…regardless of how she may be feeling.”
Carol’s story starts years ago. She began going weeks without bowel movements; nausea and vomiting left her unable to eat; and her abdomen would expand to the point of extreme discomfort. Countless tests drained her emotionally and physically, yet she would not give up hope. Many years later she was diagnosed with chronic intestinal pseudo-obstruction, severe dysmotility, colonic inertia, delayed gastric emptying, and gastroesophageal reflux disease.
Carol has undergone a total colectomy (removal of her colon) and ileostomy. For years she has been on enteral feedings and hydration, with periods of time on parenteral nutrition. "I have faced several challenges through life, but it has only strengthened me to make me the person I am today,” she says.
Carol was a physician coordinator in a busy OB/GYN office, but was forced to retire due to her health. Carol says, "It was the hardest thing for me to agree to because I did not have a choice. I loved what I was doing and I was good at it. My life took a 365 degree turn and I had to focus on other things and different ways to do things.” Carol became an Oley Ambassador, focusing on helping others on nutrition support or with problems similar to hers. Preparing formulas and medications, infusing IV hydration, undergoing tests, and dealing with infections is a constant battle. This gives her great understanding as she communicates with others.
Carol feels enjoying life is the best medicine. In 2007, her five sisters took her horseback riding for her fiftieth birthday; since then she has been hooked. Her husband bought her the horse she rode on her birthday, and Carol also takes care of the police horses in Manchester, New Hampshire. This has provided her with purpose and makes her happy.
Carol also thrives because of the emotional support she receives from her family. Married for thirty-six years, Carol and her husband have a son and daughter-in-law; in October 2013, they celebrated the birth of their first grandson.
Carol notes, "This award could not have been achieved without the inspiration I receive from so many people who have supported me, for whom I have the deepest respect and from whom I have derived the strength to challenge myself as I continue my journey through life.”
In honor of Coram CVS/specialty infusion services, Gold Medallion Partner
On January 24, 2009, Tricia Melland was a very happy, healthy, and active ten-year-old girl who loved all sorts of food. On January 25, Tricia picked up a virus that landed her in the hospital. Eventually, she was diagnosed with viral mesenteric lymphadentitis, visceral hyperalgesia, reflex neurovascular dystrophy (CRPS), autonomic neuropathy, hematuria, myopathic pseudo-obstruction, intestinal failure, mitochondrial disease, and more. She was put on parenteral nutrition (PN). Since then, Tricia has spent as much time in hospitals and doctors’ offices as she has spent out of them. However, she continues to foster a "can do” attitude.
Despite missing several weeks to several months of school each year from fifth grade through ninth grade, Tricia manages to maintain a 97 percent grade point average in college prep–level classes. She plans on using the experiences she has gained in doctors’ offices and hospitals to pursue a career in medicine.
Tricia loves the arts. At her community theatre group, she has participated in several musicals, despite being on either PN or J-feeds 24/7. Even when she had a nasojejunal (NJ) tube taped to her face, she gave it her all. That "can do” attitude helped Tricia prove that even a person on a feeding tube could springboard dive, too. Tricia became active in diving at the age of seven and despite her chronic pain and low energy, she was on the local dive team. Although she is no longer able to dive, she is looking forward to the time when she can get back into it if/when she is able to come off PN.
Although Tricia is unable to eat, she feels socializing during meals is important in the world and she refuses to miss out on that aspect of it. She enjoys baking for others, especially "FROG” cookie cakes. "FROG” stands for "Fully Rely on God.” Tricia eagerly shares Oley information with others in hopes of easing their transition. She is always willing to lend her support and knowledge to anyone in need.
Tricia has managed to travel to several states in the past few years and likes to share funny stories about the challenges she has run into. To allow others to better understand her journey and to increase awareness about mitochondrial disease, Tricia created a video for Mito Awareness Week. Tricia has also submitted photos for use in the Oley Foundation’s Feeding Tube Awareness and HPN Awareness videos (online on Oley’s YouTube channel). Congratulations Tricia!
Jameson Atkinson, Ana Maria Bennett, Tiffany Dodd, Melissa Drake, Brenda Gray, Virginia Holland, Kendall Hollinger, Natalie Holmes, Dylan Lenburg, David McMahill, Madelyn Morris, Carol Pelissier, Donna Pugh, Melody Purkey, Tegan Watkins, and Natalie Wootten
In honor of ThriveRx, Gold Medallion Partner
This year, the Child of the Year Award goes to Kendall Hollinger. As an infant Kendall was diagnosed with an anaphylactic reaction to 95 percent of all food. Still allergic and now seventeen years old, Kendall inspires and raises awareness for others who have food allergies.
Kendall thrives in all areas of her life. She started skating at the age of six and has never looked back. At age nine, she won the Ice Skating Institutes World Championship; now she competes in United States Figure Skating (USFS) at the intermediate level. Currently, she is taking some time off for health reasons.
Kendall also snowboards, wakeboards, water skis, and does about anything else she sets her mind to. When she bought her first guitar three years ago, Kendall says, "everything fell into place.” She enjoys singing and performing at Parkcrest Lakewood Church in Lakewood, California, and is currently working on pre-album production with Harmony Studios. She attributes her love of music to her grandfather (a gospel opera singer) and her grandmother (a concert pianist).
Lola, Kendall’s peanut detection service dog, is by Kendall’s side at all times. Lola is trained to sniff for peanut residue in the air or on surfaces. "Lola has helped alert me to things and potentially saved my life many times. Having her around makes my life a little easier. I will be going to college in a year and will need her to be with me there,” says Kendall.
In 2011, Kendall was the National Teen Ambassador for the Food Allergy and Anaphylaxis Network (FAAN). That same year FANN awarded her the Teen Hero Award, and honored her at a Disney Gala in Los Angeles. She says, "It was by far the most incredible night of my life!” Every year she participates in the FAAN Walk to Save a Life. She is now a National Teen Ambassador for the Food Allergy & Anaphylaxis Connection Team. Hoping her story can help make a difference in someone else’s life, Kendall has spoken on shows such as "ABC7” and "Good Morning America.”
"I am so honored and excited to receive the 2014 Child of the Year Award,” Kendall says. "I am blown away….Oley has helped my parents and me so much growing up. My goal is to show people everywhere that your medical illness cannot keep you from achieving your dreams. This award means so much to me and I am forever grateful.” Congratulations, Kendall!
Ethan Abramowitz, Markus Bachman, Lyla Ann Baisden, Caylee Barton, Madison Beckner, Ana Maria Bennett, Ellie Brogan, Delilah Garrison, Natalie Holmes, Hope Knight, Dylan Lenburg, Madelyn Morris, Logan Urbina, Grace VanTuyl, Caleb Walsh, Tegan Watkins, and Natalie Wootten
|Bob & Shannon Goldwater|
In honor of BioScrip, Platinum Partner
This year the Oley Foundation established a new award to recognize a home parenteral and/or enteral nutrition (HPEN) consumer or caregiver who sets an example by promoting innovation in nutrition therapy, or by advocating for themselves or someone in their care. This award goes to Shannon Goldwater, founder of Feeding Matters.
Shannon’s triplets were born four months premature. They overcame life-threatening infections and many surgeries, but once home, feeding became a challenge. The infants would cry, arch, and often turn blue during feedings. Desperate for help, Shannon reached out to anyone who would listen. She was dismissed several times as being an over reactive mom, but she knew something was wrong. She later learned the babies were physiologically unable to eat and were avoiding eating to avoid pain.
They lived in and out of hospitals and sought specialist after specialist for three years. When two of the triplets regressed, Shannon was told feeding tubes would be vital for their development. With this, she felt she had been given permission to finally relieve her children of the suffering they had been experiencing in their effort to eat orally.
Shannon found the triplets had benefitted in different ways from each of several different feeding programs. This, and insights gained from other families, inspired her to found P.O.P.S.I.C.L.E. in 2006. Now called Feeding Matters, the organization seeks to bring pediatric feeding struggles to the forefront so infants and children are identified early, families’ voices are heard, and medical professionals are equipped to deliver collaborative care.
Currently the Board Chair, Shannon continues to advocate for the hundred-plus families she has mentored through Feeding Matters’ Power of Two Program, which matches parents who are dealing with their child’s feeding struggle with other parents who have been through a similar experience.
The triplets are now contented twelve year olds. Megan is a full oral eater; Will and Lee still require tube feedings, but are starting to find joy in eating. Chris Linn shares, "Shannon and her family are extremely grateful the Oley Foundation exists to support individuals who are dependent on feeding tubes. With all that she and her family have been through, Shannon still finds a way to...impact the lives of infants and children who struggle to eat. She constantly advocates in the community that pediatric feeding struggles are real and parents should not be blamed, and she does this by...gathering medical experts who bring credibility and knowledge with them.”
Meenakshi Aggarwal, Markus Bachman, Beth Gore, Brenda Gray, Lance Hansard, Vicky Jacque, Robin McGee, Tricia Melland, and Mary Beth Wootten
|Brenda Gray, PharmD, BCNSP, CNSC|
Inspired by Judy Peterson, RN, MS
Brenda Gray, PharmD, BCNSP, CNSC
This year the Nan Couts Award for the Ultimate Volunteer goes to Brenda Gray, PharmD, BCNSP, CNSC, in recognition of her willingness to give of herself beyond her regular work hours to educate, empower, and improve the quality of life for home parenteral and enteral nutrition (HPEN) consumers. Brenda has been active in the nutrition support community for several years as a clinician and patient advocate. Along with her inpatient and outpatient clinical services, she has also been very active in consumer and professional nutrition support organizations.
Brenda has helped many consumers in their desire to return to work, go to school, and pursue interests such as camping, canoeing, and traveling. She has helped consumers make their dreams of taking special trips or dancing at a family event come true. Brenda also works with students and in new practitioner training, and serves as a consultant to develop student and resident educational experiences in clinical and practical aspects of nutrition support, including understanding patient advocacy.
Brenda continues to put her concern and compassion for the nutrition support community first by serving on national committees for several organizations and as a member of the National Board of Nutrition Support Certification Board of Directors. She serves in leadership roles in several areas for the American Society for Parenteral and Enteral Nutrition and the American Society of Health-System Pharmacists and has presented educational programs for the National Home Infusion Association. She serves as President-elect for the Florida Society of Parenteral and Enteral Nutrition and is an active member of the Oley Foundation.
Last year Brenda made a life-changing transition from clinician to nutrition support consumer. Willing to sharing her experiences, Brenda authored an article for Infusion magazine entitled "When the Clinician Becomes the Patient” (Infusion, July/August 2013; to read the article, posted with the permission of Infusion magazine,click here). She never misses an opportunity to educate the public on the needs of the nutrition support consumer and shares her knowledge, education, and experiences with all, from the TSA, to airlines and hotel staff, in order to inform and advocate for the nutrition support community.
Brenda strives to not let life on nutrition support define her. She continues to work, travel, and enjoy camping, hiking, beach trips, and cruises. At the forefront she remains a constant consumer advocate, providing the ultimate "help along the way.” Congratulations, Brenda!
Congratulations to the nominees:
Martha Barnard, PhD; Tamara Donnelly, RD, CD; Karen Geraci, RD, CD, LD; Karen Hamilton, MS, RD, LD, CNSC; Kevn McNamara, PharmD, CNSC; Anita Shelley, BSN, RN, CWOCN, WOCN; and Kimberly Terrell, RN, ETNS
Coordinated by Richard & Donna Noble
Lauren Moore was born with Hirschsprung’s disease. Her parents were told she would probably not survive past one year. "This was unacceptable to my parents, who strove to help me be and do all I could possibly do,” says Lauren. "Through lots of research and care, I grew into a strong young girl. I never gave up no matter what the circumstances were.” Today, Lauren is studying to be a pediatric nurse. She has just completed her sophomore year of college.
"Growing up, I never allowed my medical condition to hinder me,” says Lauren. She took ballet, tap, and dance classes, was a cheerleader, played softball. "I went to school like a ‘normal’ child, though I missed many days because of hospital stays and surgeries. Despite this, I was very involved in school. I was on the National Honor Society, FCA, Student Ambassador, BiSci club, and Interact. I was also on the varsity high school soccer and softball team. My senior year I was captain of my varsity soccer team, which was a huge accomplishment.”
One of Lauren’s college professors writes that Lauren performs many skills with "competency and beyond.” But, he notes, "the real lessons I have learned from her are the ones that spring from the way she deals with HEN/HPN. Lauren first began educating me on this with a freshman research paper and presentation. I think of it as her awareness campaign. She was so matter-of-fact about her condition. On one hand she would tell me the stories about being a guinea pig for new medical instruments all the while smiling and relentlessly positive about her life.”
He continues, "Her positive energy is not one that comes from denial of the facts of her life. She faces them squarely. She clearly is not defined by her adversity. She walks her own path with family and friends by her side. She recognizes how much she depends on her support network, but it is equally clear that she is master of her condition. I cannot tell you how rare and inspiring that is.”
Lauren can only absorb about one-third of the nutrients she consumes orally, and depends on home parenteral nutrition (HPN) for the balance of her nutritional needs. She has had forty-nine surgeries to date, and has spent almost half her life in the hospital. Yet her philosophy leads her to always have a smile on her face.
"I am thankful to be alive,” Lauren says. "We never know when our last day is and I believe we need to never take life for granted. My medical condition has helped me persevere and inspire many people. My medical condition will not hold me back or define me….I want to be a pediatric nurse and help other children overcome obstacles in their life.”
3/2/2017Riding the Tube
2/9/2017Mums team up for "tubie" support