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HPEN Ambassadors
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The main goal of the Oley Ambassador is to heighten awareness of Oley resources whether it is in their geographic area, social networking community, clinical circles, etc. The “job” responsibilities can be flexible based on the Ambassador’s skills, available time, and interest. Please call (800) 776-OLEY or e-mail metzgel@mail.amc.edu if you are interested in becoming an Oley Ambassador or learning more about what is involved. 

 

HEN = has experience with enteral (tube-fed) nutrition

HPN = has experience with parenteral (IV) nutrition

HPEN = has experience with IV & tube-fed nutrition

Parent = parent of HPN or HEN consumer

Spouse = spouse of HPN or HEN consumer

* = Has information on support group meetings

 

 


 

Dr(s) Erik & Cindy Schten

(Parents)

16 Via La Brisa
Larkspur, CA 94939
(415) 891-3112

ecschten@lvha.net

 

Eric and Cindy are parents of two children, including Rachel. Born in 1997, Rachel was dependent on Parental Nutrition, secondary to short bowel, but has been off for several years. She remains on enteral nutrition and nighttime TF. They have been amazed at the challenges they’ve encountered, and feel that as medical professionals, they have a unique opportunity to help other parents and consumers who aren’t on the inside track. They have found Oley to be a great resource, and would like to share their experiences.


Kailee Brown

kaileeebrown@hotmail.com

 

Kailee has GI dysmotility and has lived with GI problems for most of her life. She is currently on HPN, but was previously on HEN for about eight years. Being on HEN and later HPN, she had a lot of mixed feelings and questions regarding life with a tube. She reached out to others who were living similarly for support and advice, and it really helped her cope and adjust to her new lifestyle. Kailee is extremely excited about being an Oley Ambassador and hopes to use her personal experiences to offer the same support that she received. Kailee graduated from the Dominican University with her BSN. All while on HPN!



Sheila DeKold

(Parent)

Elizabeth, IN
(812) 969-3774

sheila@pefarm.com

 

Sheila is mother to David and Olivia, who has pseudo-obstruction and uses both HPN and enteral therapy. Sheila wanted to be available to others in her area, and hopes to offer an understanding ear to those in similar situations. She also believes there is strength in numbers, and welcomes the chance to connect to other families and individuals.


LeeAnne Bye

(Parent)

532 Ridgewood Dr.
Northfield, NJ 08225
(609) 641-9087

allenleeannebye@aol.com

 

LeeAnne is an RN and mother to four children, including her daughter Samantha, who has been on both enteral and parenteral therapies due to chronic pseudo-obstruction. LeeAnne and her family are familiar faces at Oley Conferences. She feels her experiences as a parent and advocate will benefit others struggling with similar issues. She would really like to start a local support group. Contact LeeAnne if you are interested in joining.


Sammi Bye

Northfield, NJ 08225
(609) 412-7083
(text is best)

sammi@aol.com

  


Sue Koprucki

(Parent)

5288 Vista Ave.
Williamsville, NY 14221
(716) 688-4411

ma2mje@yahoo.com

 

Sue had a frightening, isolating, and frustrating time when her daughter, Emily, was diagnosed with psuedo-obstruction and started on nutritional support as a newborn. Both she and Emily feel that it was the families they connected with who were in similar situations that helped them find the things they needed to make life work for their whole family, including their sense of humor! Ostomies, g-tubes, central lines, PICC lines, and even nephrostomy tubes have been in the "mix." Emily is now (2016) a full-time college student and has been able to juggle work and school, as well as a bit of family travel. Sue and Emily both hope to make their presence known to the regional medical personnel working with PEN, and help bring practical support and connect to people in northwestern New York State.

 


Malisa Matheny

Philadelphia, PA

malisam@comcast.net

 

Diagnosed with pseudo-obstruction, and a mitochondrial disorder, Malisa has been on and off enteral since 1992 and on HPN since 1994. She offers a compassionate ear to listen and her experience growing through the teen years with pseudo-obstruction as well as home enteral and parenteral nutrition. She’s also terrific discussing transitioning from parent care to self-care. Malisa is knowledgeable about summer camps that accept HPEN youths and other resources specific to young lifeliners. She graduated from Temple University’s nursing program.


Emily & Brian Hoopes       

(Parents)


4213 Barker Rd.
Taylorsville, UT 84129
(801) 955-6526

emily.hoopes@gmail.com

 

Brian is a computer programmer at a media company. Emily has worked as an administrative assistant, bookkeeper, and ESL teacher, but right now is a stay-at-home mom. They’ve been best married for 6 years. In November, 2008 they got a call telling them that they’d been selected as adoptive parents for their son Patrick by his birth family. Patrick had gastroschisis and a midgut volvulus in the womb that left him with just 15 centimeters of duodenum and a third of his colon at birth. Because he is their first child, Brian and Emily got a crash course in parenting and in short bowel syndrome while they waited for the legal aspects of Patrick’s adoption to be completed. Patrick is TPN dependent and has had several Broviac and PICC lines. Although he loves oral feeding, Patrick has a G-tube that has been used periodically for enteral feeds and medications. Despite many infections and other complications, including a cardiac arrest in 2009, Patrick is an active one-year-old. He loves people. He greets everyone he meets with a cheerful “Hi.” He enjoys music, car rides, and anything with wheels, but his favorite toys still include stethoscopes and empty syringes. He was listed for intestinal transplant at Seattle Children’s Hospital in April 2009 and is waiting for a donor. During one of Patrick’s many hospital stays, Brian and Emily were approached by Patrick’s gastroenterologist about creating a support group for families of children with short gut syndrome. He had seen many new families overwhelmed as they learned the ins and outs of tube feeding. He’d also seen the ingenuity and strength of some more experienced families and hoped that bringing the two groups together would provide support and help make caring for a child with Short Bowel Syndrome easier. A month later, Brian and Emily launched their support group and website www.shortgutsupport.com a month later. The group provides an education website and newsletter, an online message board, and in person meetings for families of children with Short Bowel Syndrome. Having often turned to the Oley Foundation website for help and information as they learned to care for their own son, Brian and Emily also applied to become Oley Ambassadors. Their hope is that they can use their experiences to help other families to feel confident and comfortable with their child’s tube feeding.



Updated 5/6/2016

 

more Calendar

9/26/2016 » 9/30/2016
Malnutrition Awareness Week

5/6/2017
Oley Regional Conference

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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