Americas Regional Members
The Avnee Foundation (Florida, USA)
The Avnee Foundation was created by Amit and Melissa Rawal, who lost their first child, Avnee, due to Meningitis B at the age of five months in 2013.
The mission of the Avnee Foundation is to beat Meningitis B through education, advocacy, and increased vaccination. The Avnee Foundation, a fund under the Community Foundation of North Central Florida, is made up of physicians, health care professionals, researchers, parents, students, and educators that share a passion for preventing the devastating consequences of meningococcal disease. To achieve its mission, the Foundation develops and supports programs that promote education about, advocacy for, and uptake of vaccines for meningococcal disease.
For more information visit the Avnee Foundation website.
Becky Werner Meningitis Foundation (Wisconsin, USA)
The Becky Werner Meningitis Foundation was set up in 2006 after the co-founders’ daughter, Becky, lost her life to the disease. Read Bob and Dee Dee’s Story.
A non-profit organisation, the Becky Werner Meningitis Foundation raises awareness of the dangers of meningitis and methods of prevention, educates the public and medical communities about meningitis, funds research at the Medical College of Wisconsin and provides support to families affected by meningitis, including giving vaccines to those who can’t afford them.
Dylan McNeil Foundation (Oregon, USA)
After two-year-old Dylan lost his battle to pneumococcal meningitis in 2009, his mother Sabrina set up the Dylan McNeil Foundation to raise money for research and prevention of meningitis. Read Sabrina’s Story.
Working to inform parents of the importance of vaccination, and the signs and symptoms of the disease, the Foundation has also raised over $32,000 for research at St Jude Children’s Hospital in Tennessee.
Emily’s Dash Foundation (Pennsylvania, USA)
The Emily’s Dash Foundation (EDF) is a non-profit, donor – advised fund organised under the auspices of the Chester County Community Foundation (CCCF) in the USA. The EDF was established in memory of Emily Grace Koenig by her parents. Emily was a perfectly healthy child until she contracted bacterial meningitis that suddenly took her life at just 12 years of age.
By building awareness of meningitis and through extensive fundraising, Emily's Dash Foundation is committed to eradicating bacterial meningitis. For more information visit the Emily’s Dash Foundation website.
The Emily Stillman Foundation (Michigan, USA)
The Emily Stillman Foundation was created in 2014 in memory of Emily Stillman, a 19 year old college sophomore who died from serogroup B meningococcal disease. Read Alicia's story.
The mission of the Foundation is twofold. Firstly, they resolve to raise awareness of all strains of meningococcal disease. They accomplish this through ongoing education and organized vaccination programs. Secondly, they resolve to raise awareness of and encourage organ/tissue donation. In addition, they offer assistance to families who have been affected by either of these two issues. The goal of the Foundation is to create a world where all strains of Meningococcal Disease are eradicated and there is no longer a “waiting list” for those in need of an organ transplant.
Fundacion Illyria Velasco Carranza (Mexico)
Fundacion Illyria Velasco Carranza promotes vaccination, provides information to the general public about meningitis, and encourages doctors to talk to their patients about the importance of prevention through vaccination.
The Immunization Partnership (Houston, USA)
Since 2002, The Immunization Partnership (TIP) has worked to promote the prevention of vaccine-preventable diseases in Houston, Texas. It does this through community education, advocating for evidence-based public policy and supporting immunisation best practices.
TIP’s Immunization Champion project that took place in 22 clinics over four years raised immunisation rates from 3% to 100%. TIP also helped establish a robust immunisation coalition-building project.
TIP has designed and promoted many positive immunisation bills and worked with The J.A.M.I.E. Group and the Williams family to make the Jamie Schanbaum / Nicolis Williams Act law in Texas in 2011. This law now means all new college students will be vaccinated against the disease.
Instituto Pedro Arthur (Contagem, Brazil)
After the founder’s son contracted meningitis, Instituto Pedro Arthur was established in 2006 to provide information, help prevent meningitis and reduce child mortality. Read Rodrigo’s Story.
The organisation travels the country to stress the importance of immunisation and fights to stop meningitis in Brazil. They successfully campaigned to have the meningococcal C vaccine included in the National Immunisation Program (Calendar Nacinal).
The J.A.M.I.E. Group (Austin, USA)
The Joint Advocacy of Meningococcal Information and Education (or J.A.M.I.E.) Group was set up in 2009 to help meningitis survivor Jamie Schanbaum share her experiences and knowledge about meningitis so that others can avoid this devastating but preventable disease.
The organisation helps lead the fight against meningitis through education and community awareness and by advocating for increased information for students, parents, teachers and the medical profession. The J.A.M.I.E. Group worked with the The Immunization Partnership and the Williams family to make the Jamie Schanbaum / Nicolis Williams Act law in Texas in 2011, which now means that all new college students will be vaccinated against the disease.
The Plum Foundation (Georgia, USA)
After my daughter, Rilee-Kate, passed away from bacterial meningitis caused by late onset Group B Strep, it became evident to me that there was simply not enough awareness about the very real danger that meningitis can cause. My goal in creating a foundation in honor of my daughter is to work towards a future where no parent has to experience the kind of loss that myself and many others have experienced.
Visit The Plum Foundation's facebook page here.
The Kimberly Coffey Foundation (New York, USA)
The Kimberly Coffey Foundation was established in memory of the founder's daughter, Kimberly Coffey, a 17-year-old high school senior from Long Island, New York. Kimberly contracted and died from bacterial meningitis in 2012 just three months before starting her college education to pursue her dream of becoming a pediatric nurse. Kimberly had been up to date on all vaccinations, including meningococcal disease, but she contracted serogroup B meningococcal disease, which did not, at the time, have a vaccine. Read Kimberly's story.
In addition to education about meningococcal disease, a very large part of the Foundation’s national awareness and education campaign is to spread awareness of the necessity to be protected by vaccination against all five of the most common serogroups, including serogroup B, which accounts for approximately half of all meningococcal disease among persons aged 17-22 years in the USA. For more information, contact Patti Wukovits, RN by emailing the foundation or visit the Kimberly Coffey Foundation website.
The Lion Heart Challenge (California, USA)
The goal of the Lion Heart Challenge is to raise as much awareness as possible for meningitis. Everyone should know the symptoms, and how dangerous this disease is if not treated right away. Alex Flatley founded the Lion Heart Challenge after suffering himself from Meningitis. Read Alex’s Story.
Now, he wants to ask the citizens of the US if they have the heart of a lion! He is trying to raise as much awareness about this disease and the possible methods of prevention so no one has to suffer from the horrible side effects. Alex also runs an annual event to raise money and awareness for meningitis via multiple activities.
“We are hoping everyone can come together to help eradicate this disease.”
The NICO Williams Foundation (Texas, USA)
As a non-profit organisation, their purpose is to educate and raise awareness with the public about bacterial meningitis. In addition, they provide free meningitis vaccinations to high school students.
Although the Jamie Schanbaum/Nicolis Williams Act requires first time college students to be vaccinated in Texas, the law has an opt out clause. As a result, many students are choosing not to get vaccinated without knowing the potential risk they face. The Foundation hope that their efforts will encourage all students to get vaccinated and totally eliminate the possibility of contracting the disease.
Visit their website for more information.
Meningitis Awareness Key to prevention (California, USA)
Meningitis Awareness Key to prevention (MAK) is a non-profit health education organisation founded in 2000 after the founder’s daughter MaryJo lost her life suddenly to meningococcal meningitis. Read Rose and MaryJo’s Story.
MAK is dedicated to increasing public awareness about meningococcal meningitis, its symptoms and transmission, debilitating effects, risks and prevention measures. It provides up-to-date information through awareness presentations with adolescents and young adults, supports meningitis legislation, promotes vaccination and collaborates with other organisations in the prevention of meningitis.
Meningitis Foundation of America (Arizona, USA)
Established in 1997, the Meningitis Foundation of America (MFA) was the first national non-profit in the USA dedicated to the education, vaccination and eradication of meningitis. It was founded by Dave Spilker, whose son was diagnosed with meningitis at 5 months old.
MFA works to support survivors of meningitis and their families through support groups, as well as advocating for research into the prevention and long-term effects of various meningitis strains, and facilitating programs to educate the public about the causes and symptoms of meningitis. It also provides scholarships for children who have had meningitis to attend summer camp through its Camp Riley Program.
For more information, contact Caroline Petrie on +1 800 668 1129 or visit the Meningitis Foundation of America website.
Meningitis Relief Canada (Ontario, Canada)
Meningitis Relief Canada (MRC) is a registered not for profit charitable organisation that was founded in 2012. MRC aims to improve the lives of individuals and families affected by the after -effects of meningitis by providing means to heal and rebuild. MRC works to educate and raise awareness of meningitis in Canada, amongst the public and healthcare professionals to prevent death and disability from the disease. MRC also provides support services including grief and bereavement counselling and financial assistance to individuals affected by meningitis in Canada.
Meningitis Foundation of Canada (Waterloo, Canada)
The Meningitis Foundation of Canada (MFC) was founded by Kathryn Blain in 1998 after she lost her 19-year-old son, Michael. No meningitis support organisation existed in Canada at the time of Michael’s death. Read Kathryn’s Story.
MFC raises funds to promote education and research in order to prevent death and disability from meningitis. It successfully lobbied the Ontario provincial government to include meningococcal and pneumococcal meningitis vaccines on the province's routine immunisation schedule.
For more information please visit the MFC website.
The PAMAH Foundation (Georgia, USA)
The PAMAH Foundation was founded by Shaquille Hodge. Shaquille lost his wife Percilla to meningitis in July 2018. The PAMAH Foundation’s mission is to educate its community on the dangers of meningitis and the importance of vaccinations through advocacy, education, and granting access to community health and wellness programs while serving families adversely affected by meningitis.
Recurrent Meningitis Association (Idaho, USA)
Established in 2016, the Recurrent Meningitis Association (RMA) is the first non-profit in the world dedicated to the awareness, advocacy, and research of recurrent meningitis. Recurrent viral meningitis is also known as Mollaret's meningitis, and means sufferers will get viral meningitis continuously through their lives. RMA works to raise awareness, advocate for, and support research into recurrent meningitis around the world. RMA also provides support services including an active Facebook support group and RareConnect community where sufferers can share their experience with others.
The Ryan Martin Foundation (Missouri, USA)
The Ryan Martin Foundation was founded in 2014 by Bryan and Courtney Martin in memory of their son, Ryan, who died from bacterial meningitis at just 14 months of age. Read Courtney and Bryan's Story.
The charity's mission is to give back to those who need help in Ryan's name. As part of this, they promote awareness of meningitis, support other families dealing with the effects of meningitis and also have a scholarship fund in Ryan's name.
Una Vida por Dakota (Peru)
The organisation ‘Una Vida por Dakota’ (One life for Dakota) has been working to raise public awareness of meningococcal meningitis since 2014 in addition to advocacy work to include the vaccine against meningococcal meningitis in the National Immunisation schedule. They have spent the last year carrying out educational talks in schools, workshops for parents and interviews with a range of media, both nationally and internationally.
‘Una Vida por Dakota’, is planning to build strong links and to join hands with other organisations which have the same objective to erradicate meningococcal meningitis in Peru as well as worldwide. As CoMO's first Peruvian member, we want to become a member so that people are made aware of the fact that this illness does not only exist in our country, but in the whole world and that there are other organisations that have the same objective, to inform and protect people from meningitis.
Friends of CoMO
Mary Clough - Canada
My name is Mary Clough, and I live in Ontario, Canada. February 26, 2005 – that is the day that changed our lives forever. Our eldest daughter, MacKenzie, died from a devastating disease – bacterial meningitis. Our family didn’t know what bacterial meningitis was or that there was a vaccine available that could have prevented her death.
In less than 24 hours, our beautiful daughter went from a healthy 19-year-old in her first year of college to losing her battle to this disease.
When MacKenzie died, I was searching for answers, and I connected with Kathryn Blain, founder of the Meningitis Research Foundation of Canada (MRFC). Since then, I have worked to raise awareness of this horrible disease and what can be done to prevent it: educate and vaccinate. Proceeds from our fundraising efforts have supported the MRFC in our shared cause.
For the past 10 years, I also have volunteered at a local hospice, working with children who are dealing with grief – and helping me to deal with my own grief.
Being a friend of CoMO connects me with other people around the world who are focused on the same mission – to raise awareness of this horrible disease, support families who have been affected and advocate for meningitis prevention through available vaccines.
Lesley Thompson - Colorado, USA
Our two year old grandson, Kale, died in 2017 from bacterial meningitis. It was in the midst of flu season and his symptoms mirrored the ones from the seasonal flu. It was a horrific 5 days with him on life support and finally his precious little body gave out. We want to spread the word about the availability of vaccines and help other families avoid the tragic outcomes of this vaccine preventable disease.
You can get in touch with Lesley by emailing her.
Regan Rogerson - Ontario, Canada
Meningitis has had a profound impact on my life after losing my brother. He was a father, a son, a husband, a teacher and a compassionate and kind human being who did not deserve this fate. After several years of deeply mourning his loss I made a decision that I wanted to harness this energy and put it towards something more positive. Using my film and marketing background I began work with the Meningitis Research Foundation in Canada and eventually COMO where I was able to assist in spreading our message in hopes that collectively we can assist others in avoiding the loss that many of us have experienced to this terrible disease.
Dr Iffat Iqbal - Ontario, Canada
I am Iffat Iqbal, an International Medical Graduate from Ontario Canada. Being in the field of medicine, managing and dealing meningitis patients is very common. I cannot forget that 12-year-old boy who lost his life while having seizures and had decreased level of consciousness. He was a diagnosed case of bacterial meningitis but was brought late. After that incidence, I never forget to tell people the red flags and dangerous combination of fever, headache, neck stiffness, photophobia and decreased level of consciousness. Being a Friend of CoMO, I want to defeat meningitis through health advocacy, spreading awareness and fight meningitis with all.