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HPEN Ambassadors
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Click on the More in this Section... menu above for Volunteer listings by category. 

 

   

 

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 (518) 262-5079 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

 

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


 

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.


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 or 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.

 




Hadar Birger-Bray

 



Blue Bell, Pennsylvania

hadarbirger@hotmail.com

 

 

Hadar was born and raised in Israel. She served in the Israeli Army and moved to the United States in 2006. She says, “I’m married to a wonderful wife and have two kids. In addition of coping with my own GI issues, my daughter suffers from gastroparesis as well. I’m a full-time power wheelchair user and suffer from progressive neuromuscular condition that affect my muscles, my GI tract, and other systems in my body. I work as a Hebrew and Judaica teacher and try to be involved with the community as much as I can.”

 

In 2016, Hadar was hospitalized after going through balloon dilation and Botox injection to the lower esophageal sphincter. After not being able to tolerate any food or drink without vomiting, she ended up with a G-tube that quickly was changed to a G-J tube as she wasn’t able to tolerate any feedings through the G.

 

Hadar says, “My experience with feeding tubes and being on home enteral nutrition (HEN) has been full of ups and downs. It was my source of nutrition and what kept me alive, but on the same token it was the reason behind being constantly admitted to the hospital every time the balloon popped. In late 2017, I found myself being admitted once again with balloon malfunction. This time I was not able to tolerate feedings. After being without nutrition for two weeks I started on home parenteral nutrition (HPN).” Hadar has a PICC line, and she also still has her G-J tube. The G tube is used for twenty-four-hour drainage and the J tube is used to administer meds.

 

Hadar has started a blog that talks about her experience, struggles, hopes, and determination. You can find it at www.fromtheheightofthechair.wordpress.com.

 

Hadar says, “I am more than happy to be here for anyone who wishes to talk and process what they go through. In the future, I hope to start a support group in my area for anyone who has been affected by HEN or HPN.”

 


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.

 
 

Tiffany Dodd

 

Framingham, MA

tiffsdo@yahoo.com

 

Tiffany is thirty-three years old (in 2018) and lives in Framingham, Massachusetts. She is the second oldest of five children, with, she notes, a very supportive single mother who played the role of both mother and father. Tiffany lives with her mother and fiancé, Javier, in the home she was raised in.

 

Tiffany lives by the motto, Live every day as if its your last; take advantage of the good days and find good in the bad days. To get through good or bad days, she enjoys photography, scrapbooking, coloring, and writing her blog, which helps her share experiences and express her feelings, by which she hopes to inspire others. (You can find her blog at www.tiffadpositivity.blogspot.com.) She is also an avid New England sports fancheering for the Red Sox and the Patriotsand she loves spending time with her family, which includes six nieces and nephews, and friends.

 

Although Tiffany had some medical conditions growing up, it wasnt until she was seventeen that she was diagnosed with primary immunodeficiency and hypogammaglobulinemia. After starting antibiotic therapy as well as IVIG, she did well enough to attend college. Her medical struggles began after she had graduated from college and joined the workforce. Because of her weakened immune system, her stomach was attacked by a virus; soon after she was diagnosed with gastroparesis. Currently, Tiffany deals with asthma, severe

anemia, allergies, cardiomyopathy, postural orthostatic tachycardia syndrome (POTS), migraines, and blood clots.

 

Tiffany lives with a J-tube that is used for medications, a G-tube that is on twenty-four- hour vent, and trans-lumbar central line through which she receives multiple IV therapies. Shes had multiple surgeries, including the placement of several central lines and feeding tubes and a roux en y (which was unfortunately unsuccessful). Over the last six years, she has tried tube feeds via both the J- and G-tubes, but has not been able to tolerate them. She is on home parenteral nutrition (HPN) twelve hours every day, as well as extra IV hydration each day.

 

In college, Tiffanys goal was to end up in the juvenile delinquency field to help kids who were heading in the wrong direction. Since she has not been able to pursue that goal, she hopes instead to inspire or help people who are alone or feel like they have no one to turn to. Before attending her first Oley conference, Tiffany says she felt defeated because nobody could understand what she was going through. After attending her first Oley conference, she found others that could relate. Now, after having attended multiple conferences, she feels like she is part of a special group. She hopes as an Oley Ambassador she can introduce Oley to people who feel the way she did before she found the organization.


Emily & Brian Hoopes    

(Parents)


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

emily.hoopes@gmail.com

 

Emily and Brian met their son Patrick when he was a week old and in the NICU. Patrick had ultra short gut syndrome, having lost his small intestine and most of his large intestine to a birth defect called gastroschisis. For the following six years, Patrick was 100 percent dependent on home parenteral (IV) nutrition (HPN). As a family, they experienced the ups and downs of home infusion therapy. They know how scary line infections, clotted lines, and lost access can be. And Patrick taught them that those things can't stand in the way of the joys of school, friends, rollercoasters, travel, and more.

 

By age five, Patrick had end-stage vascular acc3ess. Scarring had closed most of his access for central lines and finding an alternative to HPN was critical. On his sixth birthday, Patrick received a liver, intestine, pancreas transplant. His recovery has been remarkable. It took just over a year for him to transition from HPN to enteral feeding (tube feeding) and then to eating orally. (He does get a little bit of help from his G-tube for medications and for the days when eating is hard.)

 

Emily created and administers a pediatric intestinal failure support group serving the Intermountain region of the U.S. She is passionate about patient education, preserving vascular access, and organ donation.




John R. Mahalchak

 

john@mahalchak.com

(412) 225-1240

 

 

John attended Allegheny College in Meadville, Pennsylvania, for his undergraduate studies, and received a B.S. in psychology and neuroscience. He is a huge baseball fan, and has season tickets for the Pittsburgh Pirates (insert joke here…).  In addition to his family, he has a cat (named Titten), who, he says, “is a huge help for my mental health.”

 

John has battled chronic pancreatitis since 2009. For definitive care, he underwent a total pancreatectomy with auto-islet transplant in May 2013. He has experience with both parenteral nutrition (PN) (post-transplant) and enteral feeds (both pre- and post-transplant, and currently).

 

John first found Oley in 2012 after starting tube feeds for chronic pancreatitis. “However,” he says,
“I didn’t realize the importance of Oley until I attended my first conference in 2017. Getting to meet others with similar conditions was eye-opening and changed my life.”



updated: 4/27/18

 

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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