WeHaveAFace.org Canada 

WeHaveAFace.org Canada aims to broaden global awareness of Huntington's disease and Juvenile Huntington's disease. We must do everything we can to help find treatments or a cure for this disease. By embracing and utilizing various state-of-the-art technologies: international videos, films, radio, mobile application, electronic publications, and mainstream social networks, we will continue to reach our peers in the Huntington's community, as well as educating the general public.

WeHaveAFace is the premier multimedia advocacy organization for Huntington's disease. The Board of Directors, Advisors, Advocates of WeHaveAFace are unpaid volunteers. The decision to remain as an unpaid, volunteer-only organization was to ensure that our priorities remain focused on allocating 100% of donations to our Huntington's and Juvenile Huntington's community via education, resources, and financial needs. It is also our mission to directly fund Huntington's disease research.

WeHaveAFace.org Canada is a registered Not-for-profit organization: 72555 6526 RR0001

Governing Legislation

Canada Not-for-profit Corporations Act - 2017-03-02

Volunteer Board of Directors

 

Cindy Moore - President of WeHaveAFace.org Canada

Huntington’s  Disease came into Cindy Moore's family twenty years ago when her mother-in-law started to get sick in her seventies.  She was finally diagnosed with HD and passed away after a lengthy illness.  By the time she was diagnosed she had already had five children, and those children had children.  In Cindy's case, her mother-in-law passed the disease on to four of her siblings. By this time Cindy was already married and had two children of her own.  Cindy's husband began showing symptoms of the disease in his forties and passed away at the age of fifty-three.  Cindy's youngest daughter, Erin, then started to show symptoms at the age of seventeen.  They wanted to be tested as soon as their father died as they wanted children later on in life.  So the process of getting tested began.  After several months and many appointments, We were told they both carried the gene and would develop the disease at some point in their life.  You are given a CAG counts when you are tested.  Normally the higher the CAG count, the earlier the symptoms will start.  This was the case with Erin.  If you develop the disease before the age of 18 you have the Juvenile form.   Erin started to get worse over time and was getting to the point, where she could no longer be left alone.  After working for thirty-eight years, Cindy had to leave work to be a full-time caregiver for her daughter Erin and also advocate for this disease which very few people knew anything about.  It was time to let the world know what HD was.  Cindy began doing a lot of fundraising and speaking to many people about Juvenile Huntington's disease. 

 

- Cindy started with the "Pie in The Face" across Canada

-  In 2015, Erin became the face of the Campaign of Huntington’s and Juvenile Huntington’s across Canada. 

- Cindy was instrumental in lighting up both the Canadian Falls and the American Falls for HD/JHD awareness.

- Cindy Moore and Erin Wade were the first to be filmed in the documentary "The Purple Road."

 

Cindy@WeHaveAFace.org

Kevin Jess- Vice President of WeHaveAFace.org Canada

Kevin Jess is from Nova Scotia, Canada. He has been married for 35 years and has three children. Kevin works for Michelin North America as a machine operator but has owned his own nightclub and a couple of restaurants that he owned and operated with his wife Sheila, who also owned and operated a Home for Special Care. Kevin is experienced in retail management as well as restaurant marketing. Kevin is also now a caregiver to his wife Sheila who has been sick with HD for 16 years and has been active in promoting awareness of HD for several years through his writing as a journalist for Digital Journal as well as a yearly speaking engagement at Acadia University in Wolfville, Nova Scotia.

Kevin@WeHaveAFace.org

Nova Scotia, Canada

Rachel Wade - Treasurer and Secretary

Ottawa, Canada

Tracy Perkin - Events Operations Director

Tracy graduated as a Personal Support Worker in 1999.  She then continued her education and obtained her Registered Practical Nursing Certificate and in 2007, she obtained her Registered Nurse Licence. Tracy has seven children in total, and some have been adopted.  Tracy went on to work for Sick Kids Hospital in Toronto for almost ten years. Tracy moved back to Brockville, Ontario, Canada and in 2020, she started a new adventure working with Erin wade, Cindy Moore’s daughter, and she is very eager to learn about Juvenile Huntington’s disease.  I would like to be involved in Fundraising as I am an outgoing person and would love to assist Cindy and her family. Tracy would like to be involved in fundraising and looks forward to being an active member on the board of WHAF Canada.

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Heather Anderson - Director of Patient Advocacy

Heather Anderson is from Alliston Ontario, Canada. She has been married for sixteen years and has four children and four grandchildren.

Heather works at Canadian National Railway and has for thirty years.  Heather's mother was diagnosed twenty-six years ago with Huntington's disease, as well as her brother - both have passed from Huntington's disease.  Heather continues to advocate and broaden awareness of this disease as well as fundraising to find a cure.

Nova Scotia, Canada

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Volunteer Medical Advisors

 

Dr. Susan Potter

Doctor Susan Potter has her Ph.D. in psychology and is a professor at Acadia University in Wolfville, Nova Scotia. She studied clinical psychology at McGill University in Montreal, Canada.  Susan lives in Kingsport, Nova Scotia, and has known Kevin Jess (Director of Patient Advocacy for WeHaveAFace Canada) for over a decade.

Acadia University

Dr. Peg Nopoulos

Peg Nopoulos is a Professor of Psychiatry, Pediatrics and Neurology, and Vice Chair for Research, Department of Psychiatry.

Dr. Nopoulos’ research focuses on the study of the brain and behavior. This is done using state of the art neuroimaging techniques, specifically Magnetic Resonance Imaging (MRI).  Dr. Nopoulos heads the Juvenile Huntington's disease research program: Kids-HD / Kids/JHD

We are pleased to have Dr. Jan Nolta as a Medical Advisor for the "WeHaveAFace" Magazine. 

University of Iowa