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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.


 

Laurie E. McBride

(HPN)

837 Sayward Road
Victoria, BC V8Y1R5
(250) 658-2915

LMcBride@telus.net

Support Group

 

Laurie was diagnosed with Crohn’s disease in his early twenties and has a fifty-year history with the disease. He has short bowel syndrome (“short gut” or SBS) as a result of several surgeries. He was on HEN briefly and has been on HPN since 1990.

 

Laurie has traveled extensively, nationally and internationally. He was formerly active at a varying pace in his field of real estate land development, and consulting. He now enjoys a leisurely retirement on Canada’s west coast. He is a dedicated sport fisherman of both salmon and trout, and an occasional hunter/ shooter.

 

Laurie worked with an expanding team to coordinate a very successful Oley Regional Conference in Vancouver in 2011 (as a payback for the extensive supportive network to which this organization has introduced him). Laurie formerly coordinated a support group in Greater Victoria. He writes, “Your inquiries are welcome at any time.”


Don Lacey                         

(Former Caregiver)

ON, Canada
(905) 579-4737

Sandy_Lacey@sympatico.ca

Support Group

 

Don underscores, "the most impactful experience in my life was my marriage to my wife, Sandy." Sandy, who passed away September 2015, had been on home parenteral nutrition (HPN) since 1982. “The challenges associated with the evolving technology and treatment has been a gratifying ‘Life’ experience,” says Don. "Sandy faced related HPN health challenges with courage, confidence, energy, and passion."

 

Don spent forty-plus years working globally as a technical consultant in the food industry, and credits that to providing him with a unique perspective on HPN from a biochemical, aseptic protocol, and regulatory point of view. He was elected to the Royal Institute of Public Health, which he cites as “a privilege and education,” and was recognized for his expertise in water treatment/water quality issues, as well as food-borne illness associated with commercially processed foods. “I like to think my technical background enabled me to be an informed source of support to Sandy,” Don adds.

 

Don is “a true believer in life-long learning,” and has a B.A. in Psychology, a B.Sc. in Microbiology, a B.A. in Administrative Studies, and a Master’s Degree in Environmental Studies and Adult Education. He is currently [2016] pursuing an Honors Degree in Health Studies Policy Management. He enjoys relaxing with his two wonderful granddaughters, MacKenzie and Bronwyn.

 

“I look forward to continuing my support and advocacy work on behalf of PN patients here in Canada, as long as I feel I can add value. One personal goal is to establish and advance a close, collaborative, rewarding working relationship with Oley,” Don notes. He is working with health care providers and other HPEN consumers and caregivers to establish a support group in the Toronto area.


Stephanie Labelle

(Parent)

   

Quebec, Canada
(450) 563-2409

Labelle_Steph@hotmail.com

 

From his birth in 2008, Stephanie’s son William has had trouble with reflux, dysmotility, low platelets, big spleen, and low immune system. He is now (2013) on HPN fifteen hours a day and on HEN for water hydration four times a day. He has a central line catheter. Despite multiple tests, the doctors haven’t identified what is causing William’s problems. William is in first grade but, Stephanie says, his health makes it impossible for him to attend on a regular basis. Stephanie is available to talk in English or French, by phone or e-mail.


Jodee Reid

(Parent)

PO Box 12156
Ahuriri Napier
New Zealand 4110

Jodee.Wayne@xtra.co.nz

 

Jodee is mother to Matisse, who has been HPN dependent since birth due to chronic idiopathic intestinal pseudo obstruction. She is also mum to Rachel, Kalani, and Fraanz. Jodee aims to bridge the gap between HPNers in the USA and down under in New Zealand and Australia. Matisse spent six years on HPN in New Zealand before they moved to Pittsburgh, Pennsylvania, to wait for multi-visceral transplant. Jodee would like to ensure more New Zealanders and Australians have access to the information and support provided by Oley. Jodee is very excited to be part of the International support Oley offers and hope to hear from some fellow Kiwi’s and Ozzies soon.


John R. McDonald

(HPN)

5281 Valestrandsfossen
Bergen, Norway www.nifo.no

johrm@online.no

 

John was born in New Brunswick, Canada and lived on the Mirimachi until 1976, when he moved to Norway with his Norwegian mother. He currently lives just outside Bergen (on the west coast) with his wife and 13 year old daughter. He was diagnosed with familial poliposis in 1980. Surgery left him with an ileostomy. In 1983 he was diagnosed with Gardner’s Syndrome and between then and 1991 he underwent multiple surgeries, endured chemotherapy and radiation treatment to halt the growth of tumors - which was successful. John sustained himself on HPN from 1990-92. He is currently off all intravenous nutrition but does supplement his hydration with IV fluids during the summer when fluid losses are greater and when he is sick via an AV fistula in his arm. He had been a board member for the Norwegian Association for Home Parenteral Nutrition for 15 years and now looks forward to sharing his time and enthusiasm in an effort to bring Oley Foundation programs and support to the folks in Norway! Do not hesitate to contact John if you plan to travel to Norway.


Marek Lichota

(HPN)

ul. Turystyczna 60
Zelkow Malopolski, Poland

Marek.Lichota@gmail.com

 

Marek has been on HPN since 2008. In 2011, he attended the annual Oley Conference while on a trip to the United States, where, he “started his adventure with Oley.” Marek would like to share his knowledge with other patients—in Poland and elsewhere—and hopes to organize meetings and a Web site. In 2005 he started a branch of the Polish Association for IBD Patients in the southern region of Poland and in 2010 he became a member of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) Youth Group Board.

 

“Privately,” Marek says, “I’m a happy husband and the father of a five-year-old, who brings a lot of joy and strength to my life. At the beginning it was pretty tough for me to get used to HPN, but after some time I accepted it fully and now in every moment of my life I try to prove that living on HPN doesn’t exclude me from living a quite normal life.” Marek works as a marketing specialist. He welcomes your e-mails—especially if you plan on visiting Poland. Read more about Marek’s experience in “Appetite for Life: An HPEN Experience in Poland.”


Candace Verners

(HPN)

 

 (778) 747-3374 (Canada)

cverners@shaw.ca

 

 


Candace Verners was born and raised in Victoria, British Columbia, Canada. After graduating high school, she attended college and went on to work for the British Columbia government. Eventually she moved to Toronto, where she worked in the investment industry. She returned to Victoria in the late 1990s, where she continued working until she was sidelined by a severe case of Crohn’s disease.

 

Candace’s first bowel resection resulted in short bowel syndrome and in 1996 she started on HPN. Because of her Crohn’s and short bowel syndrome, she was told she wouldn’t be able to conceive a child. However, at the age of thirty-four and while on HPN, she was surprised to find out that she was pregnant—at five months into the pregnancy. She gave birth to a healthy full-term baby boy. Jason is now seventeen years old (2016).

While Candace has spent most of the past years at home raising her son, recently she has been volunteering with the hospital auxiliary. She has also been traveling and assisting/chauffeuring Jason while he pursues his career as a magician. Candace’s hobbies include photography, painting, and quilting.


Carolyn Wheatley

(HPN)

PINNT
PO Box 3126
Dorset UK BH23 2XS
01202 481625

Cwheatley@pinnt.com

 

Carolyn has been friends with the Oley Foundation for many years while running a UK support group (PINNT) with fellow patients and caregivers. She has been on HPN for more than 25 years. PINNT endeavors to support people on home artificial nutrition, it offers advice and support as it’s needed. It is keen to offer the patients perspective to improve care, shape treatment plans and enable others to have a view of home artificial nutrition from the inside out. PINNT is a non-political group but its members have no problem in speaking out. They have made great advancements in making healthcare professional listen to patients. PINNT is privileged to be part of a larger forum in the UK made up of doctors, nutrition nurses, dietitians, pharmacists and industry. PINNT is keen to support any fellow patients travelling to the UK offering help like a contact number and advice regarding facilities and procedures in the UK.


Miranda Einstein

(HPN)

 

PNDU

Sydney, Australia

contactpndu@gmail.com


 

 

Miranda is a mother to Ariel, who has been on parenteral nutrition since birth due to necrotizing enterocolitis. Miranda feels fortunate to have found and have the support of the Australian and New Zealand home parenteral nutrition (HPN) consumer support organization, Parenteral Nutrition Down Under (PNDU), from the beginning of her HPN-carer journey. She is grateful for the opportunity to pay-it-forward as the secretary of PNDU and as an Oley Ambassador. 

 

Former lawyer, current commercialization manager, and would-be filmmaker, Miranda is largely to blame for most of PNDU’s annual (and sometimes nutty) awareness videos, through which Miranda derives much joy and occasional ridicule. Miranda says she makes her own spare time by not sleeping and spends it in the ocean as often as she can.

 

Miranda and PNDU are happy to support any consumers travelling to Australia and New Zealand with information regarding facilities and procedures in its corner of the world.  PNDU's mission is to support, research, and inform consumers, carers, and providers of parenteral nutrition for intestinal failure. Its activities include online information support forums, provision of resources for members, and information-gathering for research and advocacy. 


For more information about PNDU, please visit www.pndu.org.




 

Updated 8/11/2020

 

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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