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2017 Oley Award and Scholarship Winners
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2017 Oley Awards and Scholarship Winners

Please do not contact winners or nominees for solicitation, marketing, or research purposes.


LifelineLetter Award, HPN


Kathryn Bundy

Sponsored by Nutrishare, Inc., Silver Circle Partner

Kathryn Bundy


This award is given annually to a person who has been a home parenteral (HPN) consumer for five years or longer, or his or her caregiver, who demonstrates courage, perseverance, a positive attitude in dealing with illness or caregiving, and exceptional generosity in helping others in their struggle with HPN.

At the annual conference, we were pleased to give this award to Kathryn Bundy. Kathryn is known to give of herself—her knowledge, experience, and resources—far beyond what someone would expect of her. She is selfless with her time, always giving to others. Kathryn visits patients, for example, and helps them to deal with medical and personal issues related to their care.

Kathryn is in her thirty-second year of HPN, having developed Crohn’s disease at age seven. She was left with only 15 percent of her intestines after a radical resection in 1985 due to extensive disease and no medical treatment. From the first week on HPN, Kathryn has pursued her acting career, along with a lengthy stint in live graphic design for TV shows and sports events and post-production for film and graphic design. You may have seen her in many national commercials and television shows, such as Men of a Certain Age, CSI, New York Love Stories, and feature films, including Relax and The Ones. She has also done stand-up comedy in New York City. After a ten-year hiatus focused on medical issues, Kathryn will be rejoining her career in 2018.

Having spent most of her life with Crohn’s and short bowel syndrome (SBS), Kathryn has joined forces with other patients to create the SBS Cure Project to help find a cure for SBS and intestinal failure.

Kathryn always maintains a positive attitude and spirit. Her favorite “life hacks” are:

• Sleep as much and as often as you can.

• Keep your support system close and cherish them.

• Take days off to just do nothing but recharge.

• Don’t compare your life to anyone else’s.

• Find someone who knows everything about insurance.

• Most of all, don’t give up!

 

Read Kat Bundy's press release here

 

Nominees:

Julie and Thomas Gilcrease; Kimberly Kaufman; Linda and Paul May


LifelineLetter Award, HEN


Mary Wootten

Sponsored by Trovita Health Science

Mary Wootten

 

This award is given annually to a person who has been a home enteral nutrition (HEN) consumer for five years or longer, or his or her caregiver, who demonstrates courage, perseverance, a positive attitude in dealing with illness or caregiving, and exceptional generosity in helping others in their struggle with HEN.

We were pleased to present this award to Mary Beth Wootten at the annual conference. Mary is the mother of three beautiful children—Natalie (9), Oliver (7) and Quinn (5), and an inspiration to all.

While pregnant with Natalie and living in Connecticut, Mary and her husband, Nathanael, were told that Natalie was small for gestational age and had essentially stopped growing. As a result Mary was induced early and Natalie was born.

After countless pediatrician visits and specialist referrals for various health issues, it became clear that Mary’s mission was going to be ensuring that Natalie received the best care possible, that diagnoses were understood, and that treatment plans were put in place. A feeding tube was placed when Natalie was sixteen months old. As a result, Natalie has lived as normal a life as possible and has been able to pursue many interests, such as Girl Scouts and gymnastics.

Mary has demonstrated an incredible amount of courage and perseverance over the past nine years. Despite many setbacks and challenges, she always has a positive outlook.

Mary embodies service by dedicating a generous portion of her time serving as an Oley Ambassador in New York’s Capital Region, offering peer-to-peer support to others with HEN. Whether it is visiting a young mother with an infant who has had a feeding tube placed and is afraid to leave her home, or an elderly patient who is seeking guidance, Mary is happy to share what she has learned. In addition to volunteering for Oley, she also assists her local Girl Scout Troop and is a Reiki Master Teacher. Mary has also recently joined the Oley staff, working part-time as a Program Associate.

Mary says she is guided by a quote from Mother Teresa: “It’s not how much love we give, but how much love we put into giving.”

 

Read Mary Wootten's press release here.

                

Nominees:

Ellen Renee Evans; Traci Nagy; Pam Winter


Celebration of Life


Malisa Matheny

 

Malisa Matheny

 

This award recognizes someone who has been on parenteral and/or enteral nutrition (HPEN) for three years or longer and who lives life to the fullest.

Malisa Matheny has fought hard to overcome the obstacles pseudo-obstruction and now mitochondrial disorder have presented, and she has not let these obstacles hold her back from living life to the fullest. It was an honor to have Malisa attend the conference to receive this award.

Malisa has been on home parenteral nutrition (HPN), and sometimes home enteral nutrition (HEN), since 1993. She was one of the first teenagers to become an Oley Regional Coordinator (now the Oley Ambassador program). Growing up on HPN, Malisa knew the challenges one faced gaining independence when having a chronic medical condition, so, in addition to helping others as a Regional Coordinator, she helped create a program for teens and young adults with chronic health issues at the Children’s Hospital of Philadelphia.

Determined not to let HPN hold her back, Malisa went to Temple University and graduated with a nursing degree. While in college, she met her future husband. They were married in 2005. Then, for the next four years, she experienced a decline in her health and was hospitalized frequently. A severe GI virus in 2009 left Malisa bedridden for years.

Despite her medical problems, and though many felt it could affect her health negatively, Malisa desired to be a mom. In September 2007, she underwent in vitro fertilization to create five embryos and in September 2008, one of the embryos was transferred to a surrogate. On May 27, 2009, her daughter, Julianna Hope, was born. In 2012, Malisa became part of a clinical trial.

“Now,” Malisa says, “it seems because of that drug, I have the strength to hold Julianna in my arms and to play with her. I’ve visited New York City and done a zip line! Before, the muscle strength required to turn corners in a car was too exhausting and I couldn’t tolerate it. I am so grateful the research group didn’t give up on me, and that I didn’t give up, feeling isolated and lost in the dark hole of the medical system.”

Malisa is full of love, compassion and empathy, and has given of herself many times to help others on HPN. Over the years, Malisa has been managing an online health journal and sharing her experiences with others. She has blogged, made phone calls, and has been active through Oley. She stays in touch with a large network of HPEN consumers by writing cheerful messages and sending care packages. No matter how restricted, Malisa finds ways to celebrate special moments with her daughter and loved ones.

 

Read Malisa Matheny's press release here.

Nominees:

Jameson Atkinson; Jack Leibee; Sally Moore; Pamela Schepis; Maria Stamos

 


Child of the Year Award

Sponsored by ThriveRx, Gold Medallion Partner

 
Allison Winter

Allison Winter

 

This award is given annually to a youth who has been a home parenteral and/or enteral nutrition (HPEN) consumer for one year or longer and who shows a positive attitude in dealing with illness and HPEN which encourages and inspires others.


Congratulations to Ally Winter, this year’s recipient of the Child of the Year Award!

When Ally was four years old, she had two tumors that twisted her bowel. She lost all but 25 cm of her small intestine. However, Ally has always been a resilient girl, with a smile and kind words for all around her.

Ally has rebounded from tough situations many times—from complete home parenteral nutrition (HPN) dependence with seven liters output, to severe d-lactic acidosis, to months of not being able to walk or eat. Each medical crisis has shown her strength in character and heart. She strives to be her own personal advocate. For example, when she felt she wasn’t being taken seriously by her GI doctor, Ally responded by writing the physician a letter.

Ally’s willingness to help others despite her illness is inspiring. She bakes cookies at the Ronald McDonald House, serves at church, and takes care of neighbors’ animals. Ally manages an Instagram account involving makeup design, and is a great sister to her foster brother and sister.

Ally’s family has a photo of Ally holding a school binder that she decorated, with a picture of an intestine. The caption reads, “You don’t need guts to be brave.”

 

Read Ally Winter's press release here.

 

Nominees:

Ethan Abramowitz; Zachary Daugherty; Emma Dean; Treysen Garcia; Lidia Hout; Albert Otero Rigau; Oliver Shattles-Moore; Maria Stamos; Natalie Wootten; Janie Yoo

 


Innovator/Advocator Award



Julie and Tony Bombacino

 

Julie and Tony Bombacino


This award is given to a home parenteral or enteral (HPEN) consumer or caregiver of any age who sets an example by promoting innovation in nutrition therapy or by advocating for themselves or someone in their care.

Congratulations to Julie and Tony Bombacino, winners of this year’s Innovator/Advocator Award. As parents to five-year-old special needs tube-fed child AJ, and in their life work as the co-founders of Real Food Blends, Julie and Tony are special people.

When AJ was six months old, due to constant constipation and vomiting, doctors determined he needed a feeding tube. Faced with what they felt was a nutritional limitation in traditional formula, Julie set out to research and create a homemade blended diet for AJ. Ultimately, AJ began to thrive and grow, and the Bombacinos attribute it to the introduction of real food into his diet. In the Bombacino family, the new blended diet allowed AJ to join his parents and sister Luca to make meal time into “family time.”

Inspired, Julie and Tony launched Real Food Blends. Their efforts began with Julie researching recipes and standards and creating the framework for the business, while Tony worked to support the family and consulted on various aspects of the business. Now both work full-time with their thriving company.

“We are honored and humbled to receive this award from the Oley Foundation,” say Julie and Tony. “From Day 1 of our own tube-feeding journey with our son, AJ, we turned to Oley for information and support. Receiving this award and recognition from them six years later is truly a full circle moment and one that is very special to us.”

Julie and Tony have helped introduce an alternative for people who rely on tube feeding. The couple embody what the Oley Innovator/Activator Award is all about.

 

Read Julie and Tony Bombacino's press release here.

  

Nominees:

Ann Alford; LeeAnne Bye; Victoria DeLano; Diana Marie Donnarumma; Sanford Flach; Katherine Franco; Rev. Bruce Hanson; Shawn Householder; Joy McVey-Hugick; Andrew Jablonski; Swapna Kakani; Jack Leibee; Lynn Wolfson

 


Nan Couts Award for the Ultimate Volunteer



David Mercer, MD, PhD, FRCS(C), FACS

Inspired by Judy Peterson, RN, MS

David Mercer, MD, PhD, FRCS(C), FACS, and the UNMC IRP team


This award is presented annually to a clinician practicing in the parenteral and/or enteral nutrition HPEN or a related field who has shown a willingness to go “above and beyond” to educate, empower, and improve the life of HPEN consumers.

Dr. David Mercer, professor of surgery in the Liver and Transplant Program and director of the Intestinal Rehabilitation Program at the University of Nebraska Medical Center (UNMC), is a champion for his patients. In nominating him, one of his patients wrote, “He is always looking for ways to improve practices and treatments, and goes above and beyond the call of duty in communicating with his patients and families.”

One of Dr. Mercer’s patients, Tricia M., has shared her story as an example of his dedication. Tricia had been suffering for years with terrible pain and GI problems. She had been sent to some of the finest medical institutions and specialists in the country but, until she met Dr. Mercer, nobody was able to figure out what was going on. Tricia was life-flighted to UNMC/Nebraska Medicine where Dr. Mercer and his multidisciplinary team were able to get her out of the hospital in just ten days, after she had spent more than six months hospitalized at other facilities.

Dr. Mercer looked at the big picture, consulted with Tricia’s mitochondrial specialist, and then, with his team, treated her symptoms. Although a cure for Tricia has yet to be developed, her quality of life has dramatically improved. Tricia graduated high school with honors and now attends the University of Nebraska in Lincoln. Tricia’s mother, Wendy, says, “There is no question that Dr. Mercer and his entire Intestinal Rehabilitation Program team have been game changers and lifesavers for my daughter as we have traveled the journey through intestinal failure and the unknown.”

This past year Dr. Mercer was awarded the UNMC’s Distinguished Scientist Award. This award recognizes researchers who have been among the most productive scientists in the country during the past five years. The work of Dr. Mercer and his multidisciplinary team in successfully treating children with an extremely short length of bowel was recently published in The Journal of Pediatrics.

Asked what is the best advice anyone ever gave him, professionally or personally, Dr. Mercer responded with a quote from Louis Pasteur: “In the fields of observation, chance favors only the prepared mind.”

 

Read Dr. Mercer's press release here

Nominee:

Lyn Howard, MB, FRCP, FACP; Lisa Smith, RD; University of Pennsylvania HPN team

 


Kyle R. Noble Scholarship

Ruby Barrios

 

 

Ruby Barrios

In 2007, the Noble family established the Kyle R. Noble Scholarship to help further the educational goals of individuals relying on home parenteral and/or enteral nutrition (HPEN) for their primary nutritional needs. Each academic year, a $2,000 scholarship is awarded to an applicant who embodies the qualities for which Kyle is remembered.

The Oley Foundation is pleased to announce that this year’s winner of the Kyle R. Noble Scholarship is Ruby Barrios.

Ruby has proven herself a worthy role model for many children affected by illness. Ruby was diagnosed with gastroschisis prenatally. When she was two days old, she was taken to the emergency room and had a subtotal small bowel resection. She has been dependent on home parenteral nutrition (HPN) her whole life, but it hasn’t stopped her from achieving her goals. Ruby studies theater, dance, choir, and drama. She has written and performed her own monologue. In 2015, Ruby had starring roles in her high school plays, Inherit the Wind and You Can’t Take It with You.

Ruby is also active in the Desi Club, which teaches and allows her to perform traditional cultural dances from India. She brings enthusiasm with her every Saturday when she spends time at Inner City Arts, an organization that enriches the lives of children and bridges the cultural and economic divides between them through a total art program. As an employee, she advocates for the program to take on more students like her.

Ruby has never let her illness stop her from chasing her dreams of a career in the performing arts. She maintained a GPA of 3.5 or better in high school and she will be attending her dream college, the American Musical Dramatic Academy in Los Angeles, in the fall.

Ruby continues to shoot for the stars, and we offer her our sincere wishes for success in the future.

We also want to congratulate everyone else who applied for the scholarship. We received many outstanding essays and regret that there can only be one winner. Please consider applying next year for the Kyle R. Noble Scholarship!

  

Read Ruby Barrios' press release here.

 

Updated 8/30/2017

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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