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2019 Oley Award and Scholarship Winners
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LifelineLetter Award, HPN

Sponsored by Nutrishare, Inc., Silver Circle Partner

Lauren Reimer-Ethridge

 

 Lauren Reimer-Ethridge

               The LifelineLetter Award, HPN, recognizes a home parenteral nutrition (HPN) consumer or caregiver, nineteen years old or older, who demonstrates courage, perseverance, a positive attitude in dealing with illness or caregiving, and exceptional generosity in helping others in their struggle with HPN. This year, the award was given to Lauren Reimer-Ethridge.

 

               Lauren developed GI issues at a young age and was diagnosed with visceral myopathy chronic intestinal pseudo-obstruction at the age of thirteen. She has been on HPN since then. She has experience with feeding tubes, as well, as she uses them to vent her stomach and intestine.

 

               Even in her early years, Lauren didn’t let these things hold her back from enjoying life. Now, Lauren is a blogger, photographer, and advocate for a home infusion company. She lives in Fayetteville, Arkansas, with her husband, Anthony, and puppy dog, Elway. She loves spending time with her little family and friends, vintage eyeglasses, creating engaging social media content for the chronic illness community, and spontaneous phone calls.

 

               Lauren spends lots of time communicating with those in the online chronic illness community, and often shares tips and tricks on her blog. She also volunteers with the Mid-South Chapter of the Make-A-Wish Foundation, taking photos of wish reveals and fundraising events, and helping coordinate the fulfillment of children’s wishes.

 

               In nominating Lauren for this award, several people wrote about the many ways Lauren reaches out to others. Her father cites this example: “Last summer, Lauren participated in an unusual event hosted by the library in Fayetteville. It was called the Human Book Library Day. A number of people were ‘human books’ and people could ‘check out’ a human book for a fifteen-minute interview. The subject of Lauren’s ‘book’ was ‘Living with a Chronic Illness.’ By participating in events like this, Lauren has reached out to the general population in an effort to educate them about living with a chronic illness.”

 

               Lauren has been involved with the Oley Foundation for the past several years. She attended her first annual conference in 2016 and says she was blown away by the amazing community. She finds that Oley is great at connecting a rare group of humans who all have something huge in common, and for that, she says, she is beyond grateful.

 

               She adds, “Receiving this award meant so much to me, as I know there are many just like me living this life with courage, perseverance, and a positive attitude. I hope to bring light to those people in the years to come through nominating them and letting their light shine a little brighter by being recognized for it.”

Congratulations to the nominees:

Irina Chaykowsky; Joyce Clay; Tiffany Dodd; Diana Donnarumma; Jennifer Glanden; Brenda Gray; Gaby Luna; Michael Sherels; Stephanie Torres; Jessica West; Bill Wu; Linda Zarella; Sasha Zolik


LifelineLetter Award, HEN

Sponsored by Nestlé Health Science, Benefactor Partner

Patrick Dunegan

 

 Patrick Dunegan

               The LifelineLetter Award, HEN, recognizes an HEN consumer or caregiver, 19 years old or older, who demonstrates courage, perseverance, a positive attitude in dealing with illness or caregiving, and exceptional generosity in helping others in their struggle with HEN. This year, the award was given to Patrick Dunegan.

 

               In nominating Patrick for the LifelineLetter Award, HEN, his wife, Jennifer, notes that Patrick “goes above and beyond to take care of me.” He is, first and foremost, a caregiver, and, as Jennifer notes, “being a caregiver is very stressful. [Patrick] works a forty-hour a week job and takes care of me….Over the years [he] has educated himself about my conditions. So even though he himself does not have gastroparesis, diabetes, or a feeding tube (j-tube), he knows how to care for me and knows the signs and symptoms of when things are going wrong….He tries to make life a little easier if possible.”

 

               Patrick gives of his time, knowledge, and experience to help Jennifer and others. He and Jennifer run Gastroparesis Support Services Inc. 501c3 (GSSI). According to its website (www.gpsupportservices.com), GSSI “aims to fill the gap in service by providing hotel rooms, food, and transportation for patients and their families” that travel to University of Louisville GI Motility Clinic in Louisville, Kentucky. Guests are referred to GSSI by the University of Louisville GI Motility Clinic.

 

               Patrick is also a Kentucky Colonel and Volunteer State Ambassador for the National Organization for Rare Disorders (NORD), and in 2019 was commissioned by the governor to chair the Kentucky Rare Disease Advisory Council. He spends much of his free time advocating for the rare disease community in Kentucky. “There is no reason that someone diagnosed with a rare condition should [have to] face the same struggles that my wife and I had to,” Patrick says. “Alone we are rare. Together we are strong,” he continues, quoting NORD’s trademark phrase.

 

Congratulations to the nominees:

Brianne Coffey; Kimberly Dalen; Abbie Esterline; Maddie Feder; Krista Hobson


Celebration of Life Award

Sponsored by ThriveRx, Silver Circle Partner

Nathaniel Ross

 

 Nathaniel Ross

               The Celebration of Life Award recognizes someone who has been a home parenteral and/or enteral nutrition consumer (HPEN) or caregiver for three years or more and who lives life to the fullest: traveling, fishing, gardening, volunteering, attending school, spending time with family, and so on. This year, the award was given to Nathaniel Ross.

 

               Since he was little, Nathaniel has battled health problems, including eosinophilic esophagitis, gastroparesis, Ehlers-Danlos syndrome, and postural tachycardia syndrome (POTS). His mom says, “You would think all of this and being TPN [or HPN] dependent would slow him down. Nope!...He is graduating with a 5.0 GPA and is class valedictorian.…He has volunteered over 450 hours in the last four years. He has worked with special needs baseball, helped run blood drives, is a gallery interpreter at the Museum of Natural History, collects musical instruments for our local children’s hospital, and the list goes on. He is a tap dancer, involved in the drama team at his high school, vice president of the National Honor Society [chapter], and City of Mesa student of the Year.” Nathaniel, says his mom, “has told others his health battles have just made him stronger.”

 

               We received several nomination forms for Nathaniel, some from the parents of teenagers a bit younger than him who look up to him. One parent writes, “Even though we are states apart, Nathaniel taught my son how to play yo-yo via Skype. The night before my son got his feeding tube, Nathaniel Skyped with my son and told him what to expect and was honest about the pain, nausea, etc., all while reassuring him that it would be okay. He even showed my son what his tube looked like.”

 

               By his example, Nathaniel offers parents hope for their children. Through his compassion, kindness, creativity, and determination, he lets others know they are not alone. Another of Nathaniel’s accomplishments is writing a book about eosinophilic esophagitis. One parent wrote, “My son still reads that book. It makes him feel like he is not alone….[Nathaniel] is a role model for my son and so many more, whether they are living with chronic illnesses or not. He is a hard-working, dedicated, and compassionate young man.” 

 

               Another parent wrote that Nathaniel “is an exemplary student who is devoted to finding cures and improving the lives of others with chronic illnesses. In addition, he is charismatic and so fun….No disease will stop him. If anything, he is inspired by the thought of all he can accomplish in spite of the medical limitations he may have. I can’t wait to see how high he will fly!” We can’t wait to see, either!

 

               Nathaniel writes, “I am honored to have received this award and thankful for all of the people who nominated me. I hope to continue to inspire people to keep fighting and to never let life’s challenges get in the way of achieving your dreams.”

 

Congratulations to the nominees:

Leighanne Boone; Irina Chaykowsky; James DeLano; Tiffany Dodd; Ellen Evans; Gideon Floresca; Debbie Gilbert Taylor; Jennifer Glanden; Brenda Gray; Kenneth Martin Jr.; Lynn Wolfson; Kathy Patterson; Michael Sherels; Jennifer Stoffel; Shellie Tedrick; Lynne Tower-Clark


Child of the Year Award

Sponsored by Kate Farms, Bronze Star Partner

James DeLano

 

 James DeLano

               The Child of the Year Award recognizes a current home parenteral and/or enteral nutrition consumer (HPEN) who is eighteen years of age or younger and who shows a positive attitude in dealing with illness and therapy which encourages and inspires others. This year, the award was given to James DeLano.

 

               James is an extraordinary young man living with mitochondrial disease, hemophagocytic lymphohistiocystosis (HLH), and severe eosinophilic esophagitis. Over the last eleven years James has overcome many obstacles with chronic illness, including nine years of enteral nutrition and four years of parenteral nutrition. Throughout his journey he’s remained positive, always looking for the good and sharing his experiences to help others. James has maintained his thirst for knowledge and a desire to be a vital part of his family and active contributor to his community through volunteer work.

 

               In his free time, James enjoys volunteering for organizations that have helped him and his family. His volunteer service includes yearly donation drives for the Ronald McDonald House of the Carolinas (his family’s home away from home), helping his family raise service dog puppies-in-training for Canine Companions for Independence, working at his local library, helping out at the barn where he does equestrian therapy, organizing blood drives in his community, and speaking in public to share his story whenever possible. James logged over 150 hours of community service this past school year.

 

               James not only feels compelled to help others within his local community; he also enjoys attending conferences to expand his learning and to meet others. While at conferences, James is known to reach out to the younger or less experienced children on parenteral or enteral nutrition and share his experiences. He has a way of instantly making others comfortable by relating to their story and showing genuine compassion for those managing life with similar struggles.

 

               One nominator has written about the wonderful example James is to their son: “He knows James can get sick easily and cannot eat like most kids do, but he doesn’t see James as a weak or sick person. He sees James as a smart and kind kid. He looks up to James for his creativity and he sees James volunteering in the community.…He sees the power and perseverance in his friend. He knows he is loved by James and he thinks James is one of the coolest kids in the world. James inspires my son and other kids around him to look outside themselves and whatever they may be going through and to continue to connect with the world around them to make life better for others.”

 

               James’ loving smile and warm hugs are the outward signs of his strength of character and goodness of his heart. James is a true example of strength and perseverance, and he inspires others with his determination and passion for increasing awareness about managing life with a rare disease.

 

               James says, “I am enormously honored to have received this award. I was surprised to have received this honor and never considered there would be any reward beyond the work itself.” About the conference, James says, “The Oley conference was overflowing with loving and supportive people.”

 

Congratulations to the nominees:

Tommy Adams; Easton Anderson; Gabriella Ecdao; Emma Foster; Hannah Jordan; Norah Kerr; Ellie Kuntz; Samyuel McKee; Streeter Petrizzo; Bryleigh Roop; Michael Smith


Innovator/Advocator Award

Sponsored by Avanos, Bronze Star Partner

Misti and Will Staley

 

 Staley Family

               The Innovator/Advocator Award was established to recognize a home parenteral and/or enteral nutrition consumer (HPEN) or caregiver who sets an example by promoting innovation in nutrition therapy, or by advocating for themselves or someone in their care. This year, the award was given to Misti and Will Staley.

 

               After losing their son Freeman in 2016, Misti and Will turned their grief into a passion to help others. Misti and Will have created a feeding tube holder, named the FreeArm Tube Feeding Assistant in honor of Freeman; have been instrumental in the creation of a handicapped-accessible playground in Arkansas; and provide supplies to school children.  

 

               As Misti fed Freeman breast milk through a G-tube—simultaneously adding medications and trying to keep a hand free to turn him over to keep him from aspirating when he would throw up—she realized she needed another hand. To address the need, she and Will devised an L-shaped arm out of wood that attached to Freeman’s bed to hold the feeding tube up high enough to allow for gravity feed. This makeshift arm was helpful, but only when Freeman was in bed. 

 

               After Freeman passed away, Misti continued to stay in touch with other moms she had met during his nine-month stay in the ICU. Seeing a continued need, Misti began to think about ways to make a version of Freeman’s feeding tube holder that would be portable and could be used with strollers, car seats, at the dining room table, at home or when traveling—whenever and wherever. After researching their ideas, Misti and Will designed the FreeArm, a lightweight, portable, bendable tube feeding “stand” that clamps to just about anything and holds a syringe, feeding bag, and/or pump. Today the FreeArm is being sold throughout the United States and abroad.

 

               Misti and Will’s actions in their home community show a deep commitment to the youth and children in the impoverished Mississippi Delta region where they live, just south of Memphis, as well. Misti raised over $250,000 to create and build the Freeman Playground in Helena, Arkansas, to address the need for a handicapped-accessible playground for children and families in their area. In addition, they provide backpacks and school supplies for children returning to school, and Misti and Will work with local youth to paint murals conveying positive messages.

 

               Misti and Will say they love their tube feeding community and find comfort knowing that their experiences are shared by many other inspiring people. In expressing their gratitude for being given the Innovator/Advocator Award, they write, “We met so many amazing, thriving, and inspiring people at the Oley conference. We are honored to be a part of such a kind community of people.”

 

Congratulations to the nominees:

Peyton Buhler; Irina Chaykowsky; James DeLano; Maggie English; Brenda Gray; Melinda McIntire; Nancy Pickett


Kyle R. Noble Scholarship

 Richard and Donna Noble, with Derick and his
parents, Mitzi and Rod Goldsmith.

               Oley is excited to award Derick Goldsmith with this year’s Kyle R. Noble Scholarship. Established in memory of Kyle, the scholarship helps further the educational goals of a home parenteral and/or enteral nutrition (HPEN) consumer who embodies the qualities for which Kyle is remembered.

 

               Derick, who is 20 and has recently completed high school, has been accepted into a program to become a human services assistant at a college near his home. His mom, Mitzi, writes that they only accept fifteen students a year into this program.

 

               Derick has a learning disability and, his mom tells us, worked hard with a speech therapist to put his life into his own words when applying for this scholarship. He did a wonderful job with it, and, as you read Derick’s story, it becomes clear why he and his parents are so excited he will be attending this program.

 

               “I became aware that I was different from other kids when I was very young,” Derick says. “At about six years old, I realized that my brothers and sister didn’t have tubes. I played on a special needs soccer team with my best friend Kyle, a special needs baseball team, and in some local Special Olympics events. My friends Kyle and Isabelle, who were my age and had the same issues as me, both died when I was eight years old.

 

               “I’m OK with who I am and feel no shame about my disabilities. I’ve never known any different and don’t expect people to treat me differently. Anytime someone asks, I will show and talk about my tubes. My online username for Xbox is ‘Mitomaniacl.Za’ because I have a mitochondrial deficiency. If a friend asks, I explain why I chose this name.

 

               “There have been many people at school who I inspire. My intent was to help them with their needs, but it turned out to be fun. My friend Matthew had an NG tube and was getting a G tube. He was nervous about it. So, I talked to him about how it was not a big deal. My friend Johnny has a talking device. I always talk the same with him as any other kid because he understands what you say.”

 

               Andy Guy, an intervention specialist who has worked with Derick at school, writes, “Derick quickly rose to the top of the class as our most dedicated, hard-working, and responsible student. He was eager to be in school, to learn, and to make new friends. He was a model student from the beginning….[T]he way he bonded and connected with other students…really began to captivate me as a teacher. I began to notice how his classmates loved him, how they would crowd around him just to be near him and interact with him. I began to notice how kind, patient, and nonjudgmental he was towards them. It wasn’t long before students were asking Derick for help before they would ask their teachers.”

 

               Andy continues, “[Derick’s] presence and modeling in the classroom was helping all of my students perform better. When the kids were having fun, they would have more fun with Derick. When the class was working at their maximum potential, they found a way to work even harder with Derick. When the kids would laugh, they always seemed to laugh a little louder with Derick. This young man was lifting the spirits of those around him. He was bringing joy, hope, excitement, and enthusiasm to his friends and classmates.”

 

               “Helping kids in the classroom is something that I like to do,” says Derick. “When the kids are agitated, I give them something to do. I help them stay focused on the activity so they can calm down. This also helps the teachers so they can attend to the other kids. I see and treat all kids for who they are rather than focusing on whether or not they have a disability. It is important to me to interact with everyone the same way. That is why I’m so excited to get my Human Services Assistant Certificate and be able to help kids like me.”


 LifelineLetter, July/August 2019

more Calendar

2/13/2020
Delmar NY Tube Feeding/TPN Support Group for Patients & Caregivers

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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