About Us

The Recurrent Meningitis Association is using advocacy through research to support those with the rare disease recurrent meningitis.  Listen to our founders story below.

History

How the Recurrent Meningitis Association Began

The Beginning | July 1987

Michelle Light Whitt, formerly Michelle Whittemore’s, journey with Mollaret’s Meningitis starts in the summer of 1987 when she was hospitalized for Viral Meningitis after having an EGD scope of her stomach.  She had ulcers.  Turns out, the anesthesia put too much stress on her body and within 24 hours she was in a full bout of meningitis.  The doctors were baffled.  They could not figure out what had caused it, and could only verify, at that time, that it was viral and not bacterial.  After 5 days in the hospital she was released.

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Finally Diagnosed | July 2004

Fast forwarding several years to 2004.  Michelle was hospitalized twice that year with bouts of meningitis (full throttle).  She finally was paired up with a disease doctor who diagnosed her with Mollaret’s Meningitis.  At that time She was told only 69 people had it, and that it was very rare.

Ning Support Group Founded | October 2004

Feeling alone Michelle decided to research the diagnosis and search for others who had it.  And that is the “how” and “why” the support group was formed.  They ended up with over 600 sufferers found worldwide.  The support group not only offered support, suggestions of treatment options, doctor referrals; but it offered sanity by means of connecting to others that understood exactly what you were going through.  With a rare syndrome comes the unknowns by doctors.  No one has a specialist in Mollaret’s Meningitis.  They either fall under Infectious Disease, Neurology or Primary Care.  That makes it even more important to stay in touch with others who have it; because WE are the specialists in Mollaret’s.  It is our collective symptoms, illnesses, comparisons that have confirmed the list of symptomatic/malaise for this syndrome. And the disabling effects it can have on us who have dual diagnosis.

MollaretsMeningitis.org Support Group Founded | July 2009

In 2009, one of the Ning support group members, Lisa, created her own website, MollaretsMeningitis.org.  She had asked if Michelle would like to merge with her, but after members were asked, they decided it wasn’t the right time to do it.

Facebook Support Group Started | March 2016

After a conversation with Jonathan Davies on the HealthUnlocked platform, Michael decided to create the Facebook support group for those with Mollaret’s Meningitis.  In the first year of the support group it attracted more than 300 members, including those diagnosed with the disease, supporters of someone with the disease, or people who think they may have it looking for answers.

Initial Mollaret's Meningitis Association Website Published | December 2016

In December 2016 Michael published the first version of the Mollaret’s Meningitis Association website.  Michael noticed that the previous website mollaretsmeningitis.org was offline and felt there needed to be a presence for our disease.  This was the very beginnings of the Mollaret’s Meningitis Association.
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MMA and Ning Support Groups Merge | January 2017

This year, however, was a different story.  Michelle had watched Michael’s Facebook Support Group sky rocket.  It was the time to move ahead with new technology, and let others lead the way in supporting our patients.  Michelle is honored to have been able to support so many over these years and will continue to do so as needed.

First Executive Director Hired | March 2017

At the beginning of 2017 Michael realized that running the nonprofit himself wouldn’t be possible because of the debilitating symptoms he was experiencing from Mollaret’s Meningitis and associated diseases.  So on March 18, 2017 the Mollaret’s Meningitis Association welcomed Dustin Pepper as the Executive Director.
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MMA Receives 501(C)(3) Status | April 2017

On April 13, 2017, the United States Internal Revenue Service approved the application from the MMA for 501(c)(3) nonprofit status.

MMA rebranded to Recurrent Meningitis Association | September 2018

In early 2018 Michael saw the potential challenges of naming the association after Pierre Mollaret that first discovered what has been named Mollaret’s meningitis.  Organizations, like the World Health Organization, were moving away from disease names after the discoverer and keeping them more descriptive of the disease.  So discussions began about renaming the organization and in September 2018 the Board of Directors approved the name change from Mollaret’s Meningitis Association to the Recurrent Meningitis Association.  We are still focused mainly on recurrent viral meningitis (Mollaret’s), but this allows room for us to grow into the future to potentially help more people.