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Oley 2024: Oley Recognizes Award Winners
The Oley Awards program recognizes home IV nutrition (parenteral) and tube feeding (enteral) consumers and caregivers who exhibit courage and perseverance in overcoming the adversities of illness and are generous in helping others. The stories clinicians, family members, peers, caregivers and patients relay in the nominations are truly inspiring. It is a difficult job to select just one winner for each award from the outstanding pool of nominees! We congratulate everyone who was nominated for an Oley award.
Please consider nominating someone who inspires YOU! There are so many worthy candidates! Nomination forms will be accepted January through March 2025. Visit H or call (518) 262-5079.
We hope you enjoy reading about this year’s winners. Awards were presented at the Oley 2024 conference.
Lauren Hood, HPN Hero Award
Sponsored by Nutrishare, this award recognizes a consumer on home parenteral nutrition (HPN) or caregiver, 18 years old or older, who demonstrates courage, perseverance, and a positive attitude in dealing with their illness and living a more fulfilling life on HPN.
When notified she had won the award, Lauren wrote:
I have been HPN dependent since I was two days old. I am currently thirty years old. Being on HPN has allowed me to have and continue to live my life to the fullest. I have been able to travel, play sports, go to college, become a nurse, marry my best friend, and welcome a sweet boy into this world. When my sweet boy was born, we were surprised that he would also need HPN. Today I am thankful for new medical advancements and the research going into short bowel syndrome.
Winning this award is truly an honor. I am grateful for the community that has formed and how community members support each other. Being on HPN and having a son on it has brought an entirely new perspective into my life. I enjoy helping others any way I can and helping others see the positive to HPN. It’s not always easy, but being able to live is a miracle.
Congratulations to our nominees: Bettemarie Bond, Lilly Downs, Daulton Heisey, Rebekah Urbonya
Jessica Ritchson, HEN Hero Award
Sponsored by Nestlé Health Science, this award recognizes a consumer on home enteral nutrition (HEN) or caregiver, 18 years old or older, who demonstrates courage, perseverance, and a positive attitude in dealing with their illness and living a more fulfilling life on HEN.
When notified she had won the award, Jessica wrote:
I have had a gastrostomy and jejunostomy tube due to gastroparesis and intestinal dysmotility. I was misdiagnosed with cyclic vomiting syndrome for years before being properly diagnosed with gastroparesis, due to a lack of testing and a disregard for my symptoms as a young person. It was knowledge of the chronic illness community that gave me the language to advocate for proper testing, and it saved my life. I am proud to accept the HEN Hero Award. It feels like it’s a beautiful representation of disability pride and visibility, and I am proud to be a part of it.
I am a PK-6 educator on long-term disability who has turned to social media to share information and activism about disability and chronic illness, with a focus on digestive disability and medical devices. I strive to make medical language accessible for fellow chronically ill people, as well as highlight the importance of intersectionality with all marginalized groups.
Congratulations to our nominees: Matthew Cech, Bethany Dawson, Cory Morris
Eoin McCausland, Rising Star Award
Sponsored by Abbott, this award recognizes a consumer on home IV nutrition or tube feeding, 17 years old or younger, who shows a positive attitude in adapting to life on therapy which encourages and inspires others.
Eoin’s mom writes,
At only a few days old, Eoin showed signs of needing nutritional support. It took nine weeks in the NICU, a plethora of tests over the next year and a half, and multiple specialties to end up with a diagnosis of chronic idiopathic intestinal pseudo-obstruction. Eoin had surgery to place a G-tube and worked at intensive feeding therapy. He dealt with massive distension, but always strived to participate in what his friends did. Through his elementary years, he played soccer, baseball, the viola, and was a Cub Scout.
Unfortunately, Eoin has lost his ability to have oral intake or much enteral nutrition (tube feeding) at all in the past few years and is completely dependent on parenteral (IV) nutrition at this point. He has always been part of the decision-making team when it comes to his care and is so inquisitive, making sure he understands what is happening and why. His mental health needed to become a priority in the past few years, and he advocated for and voiced his need to focus on that.
In high school, Eoin has involved himself in several clubs and the school drama, with a lead role in two productions. He continues with his goal of becoming an Eagle Scout. Eoin participates in all of these activities while on or off of parenteral nutrition. He readily answers questions and explains his medical situation to others. Last year, his first time at an Oley conference, he was in his element, meeting others his age, and connecting over shared experiences. This award means so much to Eoin because he continually strives to be a positive leader and to share his experience with others.
Congratulations to our nominees: Olivia Cassera, Sarah Hernandez, Gabriel Lopez, Zoe Miranda
Elizabeth Bond, Caregiver Extraordinaire
Sponsored by Ironwood Pharmaceuticals, this award recognizes a caregiver/supporter to a consumer on home IV nutrition or tube feeding, of any age, who demonstrates patience, compassion, and dependability, and provides effective care in helping a consumer live more fully on home nutrition support.
Betty’s daughter, Bettemarie, writes, “We learned about Oley, and two weeks later we drove several hours from Levittown, Pennsylvania, to Saratoga Springs, New York, for a picnic! Little did we know how our lives would be changed for the better that day.” Since then, Bettemarie continues, her mom “has volunteered in thousands of ways to give other families some of that magical support we received that day. She selflessly helps families locally and across the country.”
Betty has served the Oley community as an Oley Regional Coordinator (forerunner to the Oley Ambassador program); on Oley’s Board of Trustees; as a nurse at the Paul Newman Double H Ranch so kids with PN could attend; and so much more. Bettemarie writes, “She has always figured out a way to work in what needed to be done for Oley, making Oley’s mission of support, education, outreach, and advocacy a priority. She has seen the positive impact Oley has had and has been a supportive ear and guide for others going through experiences similar to ours.”
At the same time, Betty has been a “caregiver extraordinaire” within her own family as well. Bettemarie says, “My mom’s support throughout my life has enabled me to rise to heights doctors told me initially were impossible. I’ve been able to do all I have done because of her love, devotion, generous heart, compassionate way, and selfless giving nature… My TPN is to me like wings are to an eagle; it allows me to fly and to be me! And my mom is the wind beneath my backpack wings! She is also the breeze that has helped support Oley’s growth during the past thirty-three years in amazing ways.”
Betty writes, “I’m honored more than words can express to receive this award. It touches my heart deeply because Oley has been a second family to me since that first picnic we attended back in the early 1990s. Thank you, Oley staff and friends, for providing love, support, education, and strength over the years, which helped me to become the best caregiver I could be. I’m blessed to have been married to a wonderful husband for over fifty-five years. I’m a loving mother to three children and two daughters-in-laws, and a grandmom to four! I like to refer to myself as an Energy Saver for my daughter who is on home parenteral nutrition.”
Congratulations to our nominees: Leslie Bienz, Mayra Hernandez, Rachel Hoch, Gaby Luna, Mayra Miranda, Bethany Patterson, Teresa & Roger Poindexter, Tameka Simmons
