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top meningitis associations in canada: finding the right organization and resources for you

these organizations are dedicated to improving research around imd and creating awareness for the public, healthcare providers and policymakers on the dangers of the disease, prevention and why vaccination is critical.

by karen hawthorne

aug 1 2024

6 minute read

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one of the primary missions of meningitis associations in canada is to raise awareness around vaccines. getty images

invasive meningococcal disease, or imd, is a rare bacterial infection that can be fatal within hours of flu-like symptoms first appearing. it can cause tissues around your brain to swell and interferes with blood flow, shutting down your body’s organs. even with immediate treatment of intravenous antibiotics and corticosteroids, survivors can be left with brain damage, hearing loss, seizures and disability.

there are about 200 to 400 cases reported in canada each year, with several regions experiencing recent outbreaks among college students. young adults in groups are considered at higher risk because the bacteria is spread by saliva, often under the radar through sharing cups and utensils or cigarettes.

the push for vaccination awareness and coverage for vaccination has made headlines because vaccination is critical to save lives.

these organizations are dedicated to improving research around imd and creating awareness for the public, healthcare providers and policymakers on the dangers of the disease, prevention and why vaccination is critical.

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meningitis foundation canada

p.o. box 28015 r.p.o. parkdale,
waterloo, on n2l 6j8
519-664-0244
fund@meningitis.ca

meningitis foundation canada is a national non-profit that was founded in 1998 by kathryn blain who lost her 19-year-old son, michael longo, to imd in 1995. he never woke up from a coma in the icu so she could say goodbye, and died three days after symptoms first appeared and the red and purple petechial rash, a marker of severe disease, developed on his skin. kathryn and her husband walked away from the hospital in shock, not knowing who to turn to for answers about meningitis and why it happens. she connected with other parents who had lost children to imd and decided to launch the foundation to advocate for change, improving vaccination uptake and survival rates, and support for those whose lives have been impacted by imd.

there are six main strains of the bacteria that cause disease: a, b, c, w, x and y. the meningococcal conjugate vaccine, for strains a, c, w and y, for children and adults was introduced in canada in 2005, with each province and territory running its own publicly-funded vaccination program. vaccines for meningococcus are typically given to infants and then to children at age 12.

the foundation wants to make people aware that the vaccination at age 12 is no longer as effective by the time young people enter college; they need a booster. in addition, a vaccine for menb was approved in canada in 2013, with a second one approved in 2018, but they have not been introduced into routine vaccine programs in canada. they’re available for purchase and for outbreak control. adding to the risk, there is no national vaccine registry and immigrants may not have been vaccinated for any strains because of different vaccination protocols in their place of origin.

kathryn and her board members recently began a letter writing campaign to post-secondary institutions to form a policy that would allow students entering their first year to have the meningitis b vaccine and a booster for the conjugated a, c, w, y.

the foundation website has resources including a toolkit for parents, support groups, a donation portal, and information on prevention and understanding imd signs and symptoms. there are videos that share survivor stories and the experiences of those who have lost loved ones. people are encouraged to contact the foundation for help and support, and there’s an email form to reach out to dr. ronald gold, meningitis expert and former head of infectious disease at sickkids hospital in toronto, for advice and information. there are awareness bracelets and t-shirts you can purchase to support the cause – and look for events to mark world meningitis day on october 5.

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meningitis relief canada

266 thorndale rd., brampton,
on, l6p 3h2
647-702-7447
info@meningitisrelief.com

established in 2012, meningitis relief canada is dedicated to helping people affected by imd by providing the means to heal and rebuild. the national charity group raises funds for free counselling services and financial grants so that individuals and their families can manage the consequences of experiencing imd and have better quality of life. each meningitis case is different, but the common thread of the speed in which meningitis attacks means that most people are overwhelmed and traumatized – emotions that require professional intervention and support.

“discharge from the hospital can be a time of high anxiety, as often individuals may not be emotionally or physically ready to resume their previous lifestyle, and where there are serious complications more rehabilitation will be required. whether the recovery is at home or at the hospital, both situations can be difficult for the individuals and families involved. only time and rest can aid with the recovery process,” the charity notes.

the website also shares the stories of people who have experience with imd, asking the public to submit their personal journey to help relieve isolation and promote healing. while board members have had to step back from being active on social, their important services continue.

the charity’s overarching mission is to educate the public and healthcare providers about imd to prevent death and disability. because time to treatment can be life-altering, early detection is paramount to urgent care and potential full recovery.

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iwk foundation bforkai trust

100-5881 spring garden rd.
halifax, ns b3h 4s3
1-800-595-2266
support@bforkai.com

kai matthews was well known in his community as a soccer player and freestyle snowboarder who had a “calm and gentle demeanor and drew everyone towards him.” he died suddenly from meningitis b in june 2021 when he was 19. he had just finished his first year in kinesiology at acadia university. his family, who lives near halifax, established the bforkai trust with the iwk foundation (isaac walton killam health centre foundation) to honour kai’s memory and raise funds to support meningitis b research, awareness and education and training.

bforkai trust offers a toolkit to share online to create awareness and “prevent the preventable.” in 2021, the group partnered with acadia university to educate students and financially support menb vaccinations. nova scotia and prince edward island are the first provinces to announce menb support programs for post-secondary students, and bforkai is adding its voice to advocate for all post-secondary students in canada to be protected against meningitis b through provincially funded programs.

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the national advisory committee on immunization

contact through the public health agency of canada:
canada.ca/en/public-health/corporate/contact-us.html

as of 2021, 89 per cent of 17-year-old adolescents in canada had received at least one dose of meningococcal vaccine, according to the national advisory committee on immunization . the committee is a group of experts in pediatrics, infectious diseases, immunology, pharmacy, nursing, epidemiology, pharmacoeconomics, social science and public health. it provides guidance on the use of vaccines for the canadian government, working with staff of the centre for immunization and respiratory infectious diseases of the public health agency of canada to offer ongoing medical, scientific and public health advice.

the committee’s 2023 report on imd advised that a pan-canadian targeted vaccine program is challenging, and regional programs would be more effective to prevent imd in population groups considered to be at high-risk of exposure. the report made recommendations for regional programs after reviewing statistics in canada and looking at vaccination programs in other countries.

“internationally, several jurisdictions recommend catch-up or an additional dose of meningococcal vaccine to adolescents and young adults who are attending post-secondary studies or living in close quarters, including university students living in residential colleges and residential accommodation. the united states, united kingdom, australia and new zealand identify post-secondary students, particularly those during the first year of attendance and those residing in close-living situations, as being at increased risk of imd and have recommended vaccination. increased relative risk for serogroup b imd in these jurisdictions has previously been estimated to be approximately three times higher for students compared to non-students in the same age group.”

canada has aligned with the world health organization’s global call to action to defeat meningitis by 2030, but are we on track? the committee recognizes that more research is needed to better understand contemporary risk factors in high-incidence population groups (including adolescents and young adults) and bacterial transmission among these groups. the group also calls for robust surveillance and data collection for program evaluation and timely adjustments of recommendations.

imd prevention is paramount, and these organizations can move our understanding of the disease and prevention efforts forward. although vaccines are evolving, they don’t protect against all strains of bacteria and don’t have long-lasting immunity. canadians need to be aware of the risks and check with their healthcare providers or pharmacists to see if they are up to date on their vaccines.

karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto as a freelancer, and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

top meningitis associations in canada: finding the right organization and resources for you