Help us #SolvethePuzzle of #RecurrentMeningitis and join the patient registry to help us further research into this disease.
What is recurrent meningitis?
Recurrent meningitis is meningitis that occurs more than once. This rare disease has many causes including autoimmune diseases, benign tumors, infections, malignant neoplasias, and medications. The most common amongst these causes is viral infections also known as Mollaret’s.
Who We Are!
The Recurrent Meningitis Association was started because there was a need to advocate for those with recurrent viral meningitis. Our founder, Michael Hrehor, was told he had recurrent viral meningitis when he was originally diagnosed in 2009. He went online to look for information and wasn’t really able to find anything. In 2016 his new neurologist gave him another name for the disease called Mollaret’s meningitis. With this information Michael was able to find a little more information, but it was very spread out and there were not any nonprofits specifically working to advocate for research into this disease.
Michael met some other people online who all talked about the possibility of starting an online Facebook support group so they could share their experiences and possibly figure out what worked best for everyone so they could try to get better. So Michael started the Facebook support group in March 2016.
After the group started to grow it was very clear there was a need for an official nonprofit organization to advocate for research into this disease so we could find better treatments because it was very clear that there were many of us dealing with disabling symptoms. So Michael worked with a handful of members from the support group and they got together to form the beginnings of what would become the Mollaret’s Meningitis Association (MMA) in April of 2017. Since founding the MMA it has become clear that there are many others that have recurrent meningitis not caused by a virus, and the medical community is moving away from using persons names for diseases, so in September 2018 we changed our name to the Recurrent Meningitis Association to better serve the recurrent meningitis community as a whole and better align ourselves with the direction the medical community is heading in.