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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 (800) 776-OLEY or e-mail bishopj@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

 


 

Patty Woods

(Parent)

3626 Cougar Canyon
Hemet, CA 92545
(951) 766-5145

Pattywoods@mac.com

 

Patty was mother to Colyn (1994 to 2010), born with a combination of dysmotility, neuropathy, common variable immune deficiency, and mitochondrial disorder. He started on HPN when he was two years old; he also received some J-tube feedings.

 

Patty and her husband, Darrell, have been active with Oley for many years, and they lead a busy life with their four other children Alyssa, Kyle, Kayla, and Brittany, and their grandson, Benjamen. Patty is dedicated to bringing Oley to families and anyone who needs support with HPEN issues.


Robin Bodnar

(Parent)

28 Sawmill Rd.
Burlington, CT 06013
(860) 673-9478

TheBodnars@snet.net

 

Robin and family were thrust into a world that they had no idea existed on December 18, 2009, when Andrew, then 14 years old, lost more than 95 percent of his small intestine. They say, “We have never felt as alone as we did during the initial hospital stay. It wasn’t until we were introduced to Oley that we found out we were not alone.” It is Robin’s intent for no one in Connecticut to ever feel that alone and scared. She wants to work with hospital discharge planners on getting consumers introduced early to Oley and its network of support.


Rosana Shah

(Parent)

26005 Willow Wood St.
Denham Springs, LA 70726
(225) 326-8844

Parri814@gmail.com

 

Rosana and Nilam’s daughter, Parri, was born at twenty-seven weeks gestational age in 2006. At three weeks, Parri developed necrotizing enterocolitis (NEC), which left her with 17cm of small bowel and no ileocecal valve. Parri came home in October 2007, after a year and a half in the hospital—with her mother always by her side. Parri is on home parenteral and enteral nutrition (HPEN) and oxygen, yet is a very active little girl. Rosana and Nilam write that when they discovered the Oley Foundation Web site, they found it “extremely beneficial.” They hope to “help other families to feel confident and comfortable with their child’s medical dependency needs.” One of the issues of concern to Rosana and Nilam in 2011 is the problem of drug shortages. They write, “We are extremely grateful that the Oley Foundation is actively involved in addressing drug shortages, which directly impact our daughter’s care.”



Chuck Lindley

(Parent)

1618 Finnsbury Dr.
Burlington, NC 27217
(336) 229-9346

 

Chuck is a pharmacist in a hospital care setting and the father of a child who suffered a catastrophic accident with a riding lawnmower. The accident left the child HPEN dependent for his nutritional needs as he lost all but 6 inches of his small intestine. Chuck also has experience with ileostomy care from this as well. His son, Mason, passed away in 2005; but his legacy and continued impact lives via The Mason Lindley Miracle Foundation. The Foundation uses a unique outreach blending music and medicine to support children and families facing medical challenges.


Rose Hoelle

(Parent)

1449 Memorial Ave.
Gibbstown, NJ 08027
(856) 423-4885

 Rosiebowah@comcast.net

 

Rose has been advocating for better support and information for families of homePEN children since her daughter Alicia was born with hypoganglionosis in 1985. Alicia has been on HPN since birth as well as on and off HEN. As an LPN and experienced caregiver, Rose can help other parents cope with the day-to-day care and ups-and-downs of life associated with these therapies. She has a terrific sense of humor and is a good listener.


Bobbie Groeber

(Spouse)

766 Westfield Dr.
Cinnaminson, NJ 08077
(856) 829-6649

 

Bobbie’s husband, Bruce passed away in 1997 and left behind a terrific support person willing to stand behind other lifeliners who need assistance finding their way. She has over 14 years of experience of therapy “ins and outs” and various pumps and catheters. She also has experience with tube feeding her son.


Michelle Christenson   

(Parent)

 

404 Farrington Dr.
Seven Fields, PA 16046
(724) 776-9556

Mchriste@zoominternet.net

 

Michelle is mother to daughters Maddie and Isabelle. Isabelle was born with multiple challenges, including a mitochondrial complex disorder and motility issue, which eventually necessitated a small bowel/liver transplant, which she received in Pittsburg in 2004. Michelle is a founding member of the Mighty Medical Miracles pediatric support group in Columbus, Ohio, and is now happy to spread the word about Oley in their new home near Pittsburgh. Michelle can speak to parenteral and enteral therapies and the transplant journey.


Pam Winter

(Parent)

164 Mountain Crest
La Follette, TN 37766

Winterfamily8@gmail.com

 

Pam and her husband are parents to six children, ranging from thirty to twelve years of age. Their youngest, Ally, became short gut in 2008 after a tumor twisted her bowel. She lost all but 25 cm of small bowel. She has been off and on home parenteral nutrition (HPN) and hydration, off and on tube feeding (enteral nutrition, or HEN), and learned to do life with high output ostomy. Pam has learned so much and gained the courage to try different things from other Oley families. She says, “I would love to pass on our experience and be a blessing to others. There is something comforting about talking to others who truly understand this journey.” Currently (2016), Ally is off HPN, on minimal enteral feeds, and does not have an ostomy. Pam hopes Ally’s success can encourage those who are just beginning the journey.


 

Updated 8/16/16


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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