A Bold New Direction

Data has the power to transform the wellbeing of those living with or caring for someone with a neurological condition. It provides critical information that helps shape approaches to screening, diagnosis, treatment and services, and informs policies that affect the health of Canadians. But when it comes to neurological health data in Canada, gaps persist. To reduce early morbidity, co-morbidities and concurrent mental health diagnoses, and improve the lives of those who are impacted, a consistent approach to collecting complete high-quality data, linking relevant data sets, and making it easily accessible to those who need it must be a priority. Read more here.

Canada needs an updated National Population-level Neurological Health Survey

July 31, 2024 – Aging, diversity and the realities of a post-pandemic society coupled with emerging trends in neurological research, diagnosis, and treatment present an unprecedented opportunity for collaboration and resolve. We are at a pivotal time when improved understanding about the neurological health of Canadians and their need for support can make a difference in health care planning for the future. To do this, Neurological Health Charities Canada (NHCC) proposes to collaborate with the federal government to develop a National Population-level Neurological Health survey for Canada.

Read NHCC’s Submission to the Federal Finance Committee’s 2025 Pre-Budget Consultation here.

Laura Dickson new director for Neurological Health Charities Canada

NHCC is pleased to announce that Laura Dickson has joined the NHCC team as Director, Operations and Strategic Affairs, as of Monday, February 5.

Laura joins NHCC from the Epilepsy Association of Calgary which she has led as executive director for the past four years. She is also president of the Canadian Epilepsy Alliance, which is a member of NHCC and held senior positions with Alberta Health Services, the City of Toronto and the Government of Ontario.

NHCC thanks former manager Deanna Groetzinger for her support to NHCC during the past eight years. She will assist NHCC with the transition.

NHCC Vision for Neurological Health 

  • Neurological health is valued, promoted, and prioritized with representation in health policies, plans and budgets;
  • Neurological disorders are prevented and treated, avoiding deaths and disability, and improving quality of life through access to health care services, essential medicines, and ongoing research;
  • Social, economic, and educational needs and freedom from stigma and discrimination are prioritized and protected for individuals living with neurological conditions and their caregivers.

Learn how a brain tumour is affecting one individual right now: Meagan’s Story

NHCC provides solutions to MPs and policy makers

NHCC proactively provides solutions and recommendations to tackle the issues that are impacting Canadians affected by neurological conditions and challenging governments. Here are our recent submissions:

Canada needs to build on Mapping Connections 

The ground-breaking National Population Health Study of Neurological Conditions and the resulting Mapping Connections report clearly identified what it means to live with a neurological condition in Canada right now.

Quick facts from the Study

  • Unemployment among Canadians living with neurological conditions is 12 times higher than the general population.
  • Canadians living with neurological conditions use more health care services than those without a neurological condition or even those with other chronic conditions.
  • Half of all recipients of home care or in long-term care facilities have a neurological condition.
  • Forty percent of children with neurological conditions have limited educational opportunities.
  • Caregivers are essential to the well being of people living with neurological conditions but caregivers often develop their own health problems including high levels of stress.
  • Without appropriate interventions, health care costs will increase
    significantly as will the overall impact on the Canadian economy.
  • By 2031, the number of Canadians with brain conditions will increase, and
    the number of people with Alzheimer’s disease and other dementias,
    Parkinson’s disease and traumatic brain injury is expected to double.

Action is needed now

The burden of brain conditions will only increase unless we take action now. See more details on the National Population Health Study page and in the Study report:
Mapping Connections: An Understanding of Neurological Conditions in Canada

NHCC in the news: Survey led by volunteer alliance finds COVID-19 has long-term impact including brain health impairment

June 3, 2021 – A pan-Canadian survey of more than 1,000 COVID long-haulers, individuals with COVID-19 symptoms that last weeks or months, reveals the impact of Long COVID on brain health. From coast to coast, cognitive impairment or “brain fog” was among the top reported symptoms, along with fatigue and shortness of breath.

“The survey underlines earlier observations that COVID-19 can cause neurological damage which persists months after the initial infection. It clearly indicates that Canada needs action on brain health in COVID and post-COVID contexts,” said Neurological Health Charities Canada Manager Deanna Groetzinger.

See more details here. Pan-Canadian Survey Reveals Long-term Harm of COVID to Brain Health

See the full report here.

NHCC urges study of COVID-19 and brain conditions

An important issue, but one that has been little examined or discussed, is the impact COVID-19 is having on Canadian who: 1. have a brain condition and live with unknown consequences of the virus on their existing brain condition; or 2.  have had COVID-19 and have not recovered, becoming so-called COVID “long haulers” with neurological and/or psychiatric damage.

NHCC is urging the House of Commons Standing Committee on Health examine this important issue. Learn more about NHCC recommendations here.

NHCC supports Canadian Brain Research Strategy

Brain health research is critical in understanding the brain, one of the greatest and most urgent scientific challenges of our time. One out of three Canadians will be affected by a brain or nervous system illness, disorder or injury in their lifetime. They need better diagnoses, prevention and effective treatments. The Canadian Brain Research Strategy (CBRS) – developed by Canadian neuroscience leaders – can be an integral part of NHCC’s vision of an overall Canadian Brain Council  to spur unprecedented collaboration in research and healthcare service delivery. See more information about the Canadian Brain Research Strategy and how you can have input into the Strategy here.  See latest CBRS presentation here