THE OLEY FOUNDATION INC
Rating: 4.86 stars 14 reviews
Location: 43 New Scotland Ave., MC 28 Albany Medical Center Albany NY 12208 USA
Results: An NIH-funded research study by University of Kansas demonstrated that after connecting with the Oley Foundation, patients had fewer infections, experienced less depression, and enjoyed an improved quality of life. [Home Parenteral Nutrition: Does Affiliation with a National Support and Education Organization Affect Outcomes? Smith, et. al., JPEN 2002;26(3):159-163.]
Target demographics: home nutrition support consumers (those on home parenteral and enteral nutrition)
Direct beneficiaries per year:
Programs: an annual conference, a bimonthly newsletter, an equipment-supply exchange program, and other opportunities for home nutrition support consumers to network with and learn from one another and experts in the field.
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I have a long history of gastrointestinal issues, and too many surgeries and hospitalizations to go into here. In 2006 I had a non-reversible ileostomy which it took me a long time to accept. If only I had found Oley then, I think that my journey to acceptance of my ostomy would have been much shorter. I've been on alternative feeding (either tube or TPN) for over three years, and have gotten a lot of information from the site. The accumulated experiences of the members is invaluable; it is virtually impossible to present a problem or question that someone hasn't had experience with. While it doesn't pretend to substitute for a professional's advice, the site provides advice, support, and encouragement to all its members. The Oley friends monitor the site and take down offensive posts, making us feel safe in expressing our feelings without fear of being attacked. Plus, the process of offering support to others makes sense out of the experiences that I've been through -- it gives a meaning to my suffering to be able to help others who find themselves in the same situation.
If I had to make changes to this organization, I would...
Add a poetry corner. Many of us write poetry and/or get inspiration from others' poetry, and it would be nice to have the poems collected in one place that we could conveniently visit and browse.
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