The CCNNPDF Board of Directors

Mailing Address:

Director of Purchasing and Production Planning, P & H Foods in Hanover, Ontario. Tammy is also on the Board of Directors for the National Niemann-Pick Disease Foundation in the United States and the mother of of Alex and Laura Vaughan, who both had Niemann-Pick Type C. Alex passed away at age 4 and Laura at age 6.

Update from Tammy Vaughan, CCNNPDF Chair, March 2009

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Legal Assistant and Trainer at the law firm of Cavalluzzo Hayes Shilton McIntyre & Cornish. Founded the Life for Luke Foundation with her husband Enio Liegghio. Vice-Chair of the Canadian Chapter of the National Niemann-Pick Disease Foundation. Highest title of all however, is being mother of Vanessa and her brother Luke who lost his battle with NPC on June 10, 2005, at the age of 8.

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[email protected]

Sandra Cowie, Director-at-Large
(NPB Adult Patient)

Sandra has been with the foundation since 2008, bringing not only her background in healthcare, but patient perspective as a Niemann-Pick Disease Type B patient.

She is Co-Chair of the Research Committee and works very closely with both our Scientific Advisory Board, but also with current and potential Fellows.

Sandra currently lives in Ontario, Canada

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[email protected]

Heather Patenaude Taillefer, Director-at-Large

Heather was introduced to the foundation after her first-born daughter Monica was diagnosed with Niemann-Pick Type C just shy of turning three months. Even though Monica lost her courageous battle in May, 2012 her legacy and impact in this world continues on through those she touched. Monica transformed Heather's outlook and makes her live life in the moment and see the beauty all around her. Heather is a stay-at-home mom to Monica's baby sister Bella, who was born in 2013. Heather wants to bring awareness to NPD and help other families, all in her precious princess Monica's honour.

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Dr. Julian Raiman, Director-at-Large

Dr. Raiman is currently the lead clinician for Lysosomal Storage Disease patients in the Division of Clinical and Metabolic Genetics at the Hospital for Sick Children in Toronto, and is a project investigator collaborating on a variety of ongoing trials including being the site investigator for the NIH Lysosomal Diseases Network.  He also sits on the North American Board for the Hunter Outcome survey and the Medical Advisory Board of the CCNNPDF, as well as the Canadian Society for MPS and Allied Diseases.   Dr. Raiman received his paediatric training in the UK and Australia, with his metabolic training having been completed in Toronto.

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Adam is Tammy Vaughan's nephew and a Graduate Student at the University of Regina. He is a director on the CCNNPDF board.

Bobbi Voisin, Director-at-Large

Bobbi is a business graduate from Wilfrid Laurier University in Waterloo, Ontario. Bobbi is employed at P&H Foods in Hanover, Ontario where she was introduced to Niemann-Pick Disease through her co-worker, Tammy Vaughan.

[email protected]

[email protected]