A Message from Rossana Magnotta

 
The G. Magnotta Foundation for Vector-Borne Diseases is a non-profit organization. One of its primary focuses is to establish Canada’s first research centre for vector-borne illnesses including Lyme Disease which is growing rapidly across Canada. The Foundation has been named in memory of Gabe Magnotta, co-founder of Magnotta Winery, to recognize his lengthy and courageous battle with Lyme Disease, a battle he and so many other patients should never have lost in this country.

Lyme Disease is a bacterial infection caused by the bite of an infected tick which creates flu-like symptoms in the beginning. Left undiagnosed, this multi-system infection can then attack a person’s heart, brain, joints, connective tissue, muscles, digestive system, skin, eyesight, hearing and more. It even mimics other diseases resulting in a prolonged misdiagnosis.

Here’s the good news.
We already know what Lyme Disease is and how to prevent it. Lyme Disease is a borreliosis, an infection caused by bacterial organisms called Borrelia. We know how to treat it and, in most early cases, it is successfully treated with antibiotics.

But here’s the bad news.
The past three decades of research, testing and clinical practice guidelines have been poorly managed. Tests that have been used since the early 1990s are incapable of detecting all the known strains and species of Borrelia that occur and, therefore, they miss a substantial number of cases. In addition, ticks that transmit Lyme Disease often carry other infectious pathogens so a person can be infected with more than just Lyme Disease from the same tick bite and that can confound treatment. A percentage of patients are very difficult to treat for that and a variety of other reasons. North America truly has no grasp at all on the true burden of vector-borne disease in its large and expanding chronically ill population.

Our screening test in Canada for Lyme Disease has been so unreliable and riddled with false negatives, chances are you will be misdiagnosed for months and bounced from specialist to specialist. Then, with little recourse, you journey to a U.S. facility where Lyme Disease is quickly diagnosed and you learn the devastating news that, by now, the damage may be irreversible and potentially life-threatening.

This is what happened to my family. With Gabe’s illness, we didn’t have answers from anyone for a very long time so we learned first hand the difficulties Canadians face in receiving an immediate, accurate diagnosis and ongoing care. There was nowhere for us to go in Canada that could understand and help us. After a 7-year battle, Gabe passed away.

This is not an isolated case. It’s a story I hear again and again. For more than seven years, I have been inundated with calls from people who are frightened and just beginning their frustrating struggle to find answers and proper treatment for their loved ones.

During my experience, I turned to the Canadian Lyme Disease Foundation (CanLyme) for personal support and then became passionate about fighting the obstacles that are preventing sufferers from being heard, eventually becoming a director on CanLyme’s Board. This is a wonderful organization that does relentless hard work every day to spread awareness for Lyme Disease as well as inform medical and political communities to properly address the diagnosis, treatment and recognition of this disease in Canada. In addition, there are many other local and provincial groups and associations focused on education and supporting Lyme patients.

But the real answer today is to establish a central place in Canada where people can go to get real help and end their frustrating and hopeless struggle. The G. Magnotta Foundation for Vector-Borne Diseases will focus on this mandate by raising funds to establish a facility dedicated to Lyme Disease research that will lead to better testing and treatment. It will also support studies and activities necessary to properly address this growing health crisis that affects all Canadians.

Rossana Di Zio Magnotta
President & Founder


Foundation Board Members

DIRECTORS

Rossana Di Zio Magnotta
President & Founder

David S. Altshuller

Jim M. Wilson

Douglas M. Wilson | M.D.

Felix Sperling | M.Sc, PhD
 

ADVISORS

Vett Lloyd | PhD

Janet L. Haley Sperling | M.Sc, B.Sc. Ag., PhD Candidate

Melanie K. B. Willis | B.Sc. (H), PhD

 

For more information about Lyme Disease, prevention and diagnosis:

Visit the Canadian Lyme Disease Foundation or call 250-768-0978.