WE ARE DEVOTED

to finding a cure for Niemann-Pick disease. We work to create a positive difference in the lives of those currently, and yet to be, diagnosed with Niemann-Pick diseases. We are grateful for our donors to be funding science and research to progress knowledge and treatments for Niemann-Pick diseases.  We are committed to advocate towards improved access to therapies within Canada for patients who are affected. Our volunteer staff is also dedicated to increasing much needed awareness about Niemann-Pick diseases within Canada as well as around the world in collaboration with our global partners. 

BOARD MEMBERS

CHERYL MARCOGLIESE

Cheryl joined Niemann-Pick Canada when her two young boys were diagnosed with Niemann-Pick Type C (NPC) in 2016. There wasn’t any other choice but to overcome the fear and devastation of this terrible diagnosis and to become immersed into fighting for a better future for her boys and all those diagnosed with Niemann-Pick diseases. Since then, she, with her husband Paul, have connected with other families living with this same diagnosis, dedicated organizations and passionate advocates around the world who are all fighting towards a cure to this terrible disease.  Cheryl, her husband and two boys reside in Toronto, Ontario.

MARISA FILIBERTI

Marisa recently joined the Niemann-Pick Canada board of directors in hope to bring greater awareness to this disease. In August of 2018, her beautiful niece was diagnosed with Niemann-Pick Type C (NPC)Seeing how this news was devastating to her sister, brother-in-law and everyone around hershe reached out to bring some light to her family. Being a special needs teacher, she experiences first hand how a disease can be challenging, but is also able to witness beautiful victories. She now brings that passion to this board …. THE VICTORY OF A CURE! “A winner is a dreamer who never gives up” Nelson Mandela. Marisa resides in Quebec.  

PATRIZIA KOHLY

Patrizia is the Director of Fundraising at Niemann-Pick Canada. When Patrizia commits to something she’s 100% all in, and she is highly committed to finding a cure for NPC. She first came into the position at NP Canada in 2017 when she learned Paul and Cheryl’s two boys were diagnosed with NPC. Since then Patrizia has spear headed successful fundraising projects such as the Bay Street Conquers NPC annual gala in 2018 and 2019. Her strong ability to negotiate and quirky love for organization makes her the perfect fit for our team. Her hope is to see this as the first generation to survive after a diagnosis of NPC. Patrizia resides in Toronto, Ontario with her husband and three children.

PAUL MARCOGLIESE

Paul is the proud father of two wonderful boys that were diagnosed with Niemann-Pick Type C in 2016.   Being part of Niemann-Pick Canada allows him to be part of curing this horrible disease. Paul resides in Toronto, Ontario with his wife Cheryl and his two boys.  

SANDY COWIE

Sandy Cowie lives and works as an occupational therapist in Toronto, Ontario.  She was diagnosed with Niemann-Pick Disease Type B/ASMD as a young child.  She has been active in the Niemann-Pick Disease community for a number of years serving with various committees and Niemann-Pick Disease organizations and working to raise awareness of Niemann-Pick Disease.  Currently, she serves on the board of Niemann-Pick Canada and President of the International Niemann-Pick Disease Alliance (INPDA) with the goal of improving the road ahead for all living with Niemann-Pick Disease. This will be achieved  through research to improve understanding of the disease and treatment options as well as increased awareness as we continue to strive towards  the ultimate goal of finding a cure for Niemann-Pick Disease. 

RYAN BALL

Ryan is a professional in the investment management industry with a CFA designation.  Ryan currently resides in Toronto, Ontario with his wife and two children and is active as a community volunteer.  Ryan joined the NP Canada in 2017 as he felt he was very lucky in life and saw an opportunity to give back and help friends.  Ryan also feels personally aligned with the charity’s underlying strategy to keep expenses low in order to direct as much funds as possible to research.

HEATHER PATENAUDE TAILLEFER

Heather is the proud Mother of an angel princess and two rainbow babies. Her first born child, Monica was diagnosed with NPC just shy of turning three months old given only months to live. She surpassed all her doctors’ expectations and almost made it to her third birthday. Heather is a dedicated wife to her teenage sweetheart and loving mother to her beautiful daughters Bella and Ariella. She works full-time as a credit and expeditions logistic manager. Heather continues to share Monica’s journey with others and holds an annual fundraiser in a continued effort to spread awareness. To her, being a part of NP Canada is a way of honouring her sweet princess’ memory by fighting for a cure and helping other Niemann-Pick Families. Heather resides in Quebec with her husband, beautiful rainbow daughters and Monica’s memory which is very much alive within her family every day.

TAMMY VAUGHAN

Tammy is the proud mom of 3 beautiful children. Michael who is 35, Alex who will forever be 4 years old and Laura who will forever be 6 years old. Her son Alex was born in 1988 and diagnosed with Niemann-Pick Disease Type C in 1990 and passed away in 1992.  Laura was born in 1995 and diagnosed with Niemann-Pick Disease Type C in 1996. Laura passed away in 2001.  Alex and Laura had Niemann-Pick Disease Type C2.  4% of people diagnosed with NPC have the type 2 variant.  In 2003 her family organized the First Annual Alex and Laura Vaughan Memorial Golf Tournament, and so began her journey with advocacy and fundraising for Niemann-Pick Disease.  Canada’s Niemann-Pick Disease group formally became a registered Canadian charity in 2006.  Tammy joined the Niemann-Pick Disease Foundation in the US in 2004 and continued to serve on that board until 2014.  In 2009 she was one of the Canadian representatives at the inaugural meeting of the International Niemann-Pick Disease Alliance and continued to serve with this group until 2018.  For 33 years she has fought with Niemann Pick Disease, and is extremely proud to be a part of the Niemann-Pick Canada group to continue to battle to eradicate all types of Niemann-Pick Disease.  

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