Lorraine Johnson, JD/MBA

“A Sour Taste”: Our CEO, Lorraine Johnson, talks Lyme vaccine concerns with CNN cnn.com/2026/03/31/hea…

Today we’re celebrating an absolute force in the Lyme community—Lonnie Marcum. 💚 Lonnie, thank you for your years of service at LymeDisease.org and for being the kind of advocate who shows up—again and again—for patients and families who need hope, truth, and action. Your advocacy has been deeply personal and powerfully effective ever since your daughter’s diagnosis, and your impact has reached farther than you’ll ever know. As you step into retirement, we’re cheering you on for this next chapter: more joy, more rest, more time soaking up every moment as a grandma (the very best title of all). 🥹✨ And congratulations, too, on Marcum Olive Oil—award-winning for a reason. 🫒🏆 From advocacy to entrepreneurship, you’ve shown what dedication and heart can build. Thank you, Lonnie. We love you, we appreciate you, and we wish you the happiest retirement. 💚 #LymeDisease #LymeAdvocate #LymeDiseaseAwareness #PatientAdvocacy #ChronicIllness #InvisibleIllness #LymeCommunity #LymeDiseaseOrg #Gratitude #Retirement #GrandmaLife #MarcumOliveOil

🧵 1/10 We are excited to share our preprint examining pre-pandemic POTS and Long COVID, using deep analysis of the insoluble microclot fraction of blood. Our study shows that the key pathology lies not in protein levels, but in post-translational modifications (PTMs) hidden within fibrinaloid microclot complexes (FMCs). With @Renata_MBooyens, Satish Raj, @dbkell and others. Funded by @POTSActivist biorxiv.org/content/10.648…

Do you know someone with Lyme disease? 💚 #igenex #ticks #lymeawareness #lymeeducation #lyme #lymedisease #chronicillness #invisibleillness #tickbornediseases #tickborneillness #chroniclyme #livingwithlyme #lymewarrior #coinfections #infectiousdiseases

A response from Olivia for the invitation to be the patient representative at the historical HHS Lyme Round Table with Secretary RFKJr. : “Good morning, this is Olivia 💚 I am very grateful to be invited to sit next to U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr. for this historic Lyme disease roundtable. For so long, Lyme patients have struggled to be seen, believed, and properly diagnosed. To be invited to share the patient voice—alongside providers, researchers, and leaders shaping the future of care—is something I don’t take lightly. I will be speaking not just for myself, but for every patient and family who has lived with uncertainty, pain, and perseverance. This moment represents hope, progress, and the power of coming together to move Lyme forward. Thank you for listening to patients. Thank you for taking action. And thank you to the entire Lyme community who made this moment possible. We must find a cure, 💚 Olivia” #LymeDisease #PatientAdvocate #LymeAwareness #HistoricMoment #VoicesOfLyme #HopeForHealing #Grateful #HealthcareProgress

In 2017 @Lymenews release of “The Top 10 Research Priorities” after @HHSGov named a new federal advisory panel for tick-borne diseases. The first meetings were held in 2017. The number one research priority for Lyme disease? Better testing! READ MORE: lymedisease.org/top-ten-lyme-p…

Lambert High School in Georgia was the only U.S. school to place in the high school top 10 at iGEM, an international synthetic biology competition. The other top teams included one from South Korea, one from Taiwan, and seven from China. cbsn.ws/4rt3a0d

This year marks a major milestone for the MyLymeData patient registry—our 10th anniversary. To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of groundbreaking research, collaboration & progress. READ MORE: lymedisease.org/mylymedata-202…

This year marks a major milestone for the MyLymeData patient registry—our 10th anniversary. To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of groundbreaking research, collaboration & progress. READ MORE: lymedisease.org/mylymedata-202…