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DDNC 2025 �Thank You for having the Oley Foundation.

Speaker

Vincent Rosche

PN/EN lifetime consumer

Community Engagement Coordinator

The Oley Foundation

Oley Mission:

Enriching the lives of the PN and EN community.

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Parental (IV nutrition) Nutrition consumer
Eternal (Tube Feeding) Nutrition past consumer
CIPO- Chronic Intestinal Pseudo Obstruction
Diagnosed at Age 4
LADS procedure (surgery to correct twisted or mispositioned intestines)
G-Tube age 4 for tube feedings
Age 6 first PICC line
Age 8 (independently accessing own port with supervision)
Age 33 Femoral tunneled catheter (long term vascular access)

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TPN 10 Hours a day 7 days a week
Do not use EN currently
Mickey G-Tube for medications and venting
Had over 50 central lines and ports
Familiar to the ups and downs of the PN and EN world
Experiences
Delays on medications
Denied care
Forced to switch infusion company’s
Wrong supplies and medications

TPN 10 hours a day 7 days a week.

Do not use Eternal Nutrition currently but still have a Mickey G tube for meds and venting.

Having over 50 central lines and ports, I am all to familiar with the ups and downs of the PN and EN world.

Experiences

Delays on medications because of nationwide shortages
Denied same care I have been given for years because of a complication
Forced to switch nutrition pharmacies because of local branch closures
Wrong supplies or medications for my IV nutrition numerous times

Those are just a few examples I my self have faced as a PN and EN consumer throughout my life.

Some of these challenges I have faced were things I should have never experienced

But now as part of Oley Foundation, I am hopeful that we can make positive changes for the betterment of the PN and EN community.

I am very passionate about his community not only because I also belong to it, but over the years I my self have delt with issues and have heard from others they often had the same struggles as I did

This made me realize the lack in the PN and EN community

I think together we can start to make an impact on the lives of this community.

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Oley’s next steps

Finding people in their journey earlier & connect with community

Patient side : changes to improve the way they navigate the journey.

Discharge planning for patients
Patient education

Clinician side:

Guidelines and reimbursement

Patients, Care givers, Clinicians, Industry and Associations.

Info@oley.org

Thank you