Texas meningitis survivor's advocacy expands to New York as vaccination efforts intensify

Jamie and Patsy Schanbaum, whose experience with meningococcal disease led to Texas vaccine laws, are now working with New York officials to further prevent the disease amid updated CDC guidance.

Jamie and Patsy Schanbaum, the Texas mother and daughter whose campaign after a near-fatal meningococcal infection helped change college vaccination policy, are widening their work beyond their home state as the autumn term begins. In a January 2026 announcement from GSK, their non-profit, The J.A.M.I.E. Group, said it planned to work with city and state officials in New York on meningitis prevention. That push comes alongside CDC guidance, updated on 30 March 2026, which continues to recommend routine meningococcal vaccination for adolescents and urges families to discuss extra protection for older teenagers before they head to college.

The public-health message is straightforward because the disease is not. Meningococcal disease is uncommon, but it can turn critical in hours, causing either meningitis or a bloodstream infection. CDC guidance says all children aged 11 to 12 should receive a MenACWY vaccine, followed by a booster at 16 because protection fades over time. For healthy teenagers and young adults aged 16 to 23, MenB vaccination is decided through shared clinical decision-making, with ages 16 to 18 preferred. The agency also notes a combined MenABCWY option when both types of protection are needed at the same visit. GSK’s release, citing the burden of disease, said about one in 10 people who develop meningitis die and one in five survivors are left with long-term disabilities.

For the Schanbaum family, that guidance is rooted in what happened in November 2008. KRWG reported that Jamie Schanbaum was a 20-year-old sophomore at the University of Texas at Austin when she woke up at a friend’s house on 12 November “feeling more than not right”. The family’s own account says she was taken to Seton Hospital in Austin after flu-like symptoms and what she thought was an asthma attack. Within 48 hours, relatives learned she had meningococcal septicaemia, a severe bloodstream infection caused by Neisseria meningitidis rather than the more familiar inflammation around the brain and spinal cord. The J.A.M.I.E. Group says roughly one in 10 people may carry the bacteria in the nose or throat without realising it, while KRWG said it can spread through coughing, sneezing, kissing, and sharing drinks or utensils.

The speed of the illness shaped everything that followed. KRWG said Schanbaum spent seven months in hospital, underwent more than 50 sessions in a hyperbaric chamber and had at least 15 operations and skin grafts. She later told the outlet, “People HAVE to get the vaccine.” The family’s website says she survived but lost both legs and several fingers. Patsy Schanbaum, writing for the Confederation of Meningitis Organisations, put the warning even more starkly: “I almost lost my daughter to meningococcal disease.” In the same account, tied to World Meningitis Day, she wrote that as a mother she watched Jamie endure multiple amputations and stressed that a single day can be the difference between life, disability and death.

That experience quickly turned into organised advocacy. The J.A.M.I.E. Group says it was founded in 2009, with its name standing for Joint Advocacy of Meningococcal Information & Education, and that Jamie helped push Senate Bill 819 through the Texas legislature that year. Public accounts differ, however, on how the college requirement later applied. KRWG reported in 2012 that the Jamie Schanbaum and Nicolis Williams Act required college students under 30 in Texas to have a meningitis vaccination or booster before the first semester. The family’s current website says the expanded law applies to incoming students under 22, not only those living on campus. Writing on the Texas Tribune’s opinion site in 2015, Jamie Schanbaum, Patsy Schanbaum and immunisation advocate Greg Williams said Texas had become the first state to require meningitis vaccination for college students and urged lawmakers to go further by making records easier to keep and boosters easier to obtain.

The campaign also broadened beyond one family. In that 2015 piece, Williams described himself as the parent of a college student who died from meningitis, while Patsy Schanbaum was identified as the mother of a survivor who lost both legs and several fingers. Together they argued that stronger immunisation laws would save lives and wrote: “Hundreds of thousands of Texans would immediately get the protection we know they need.” Patsy Schanbaum has since taken on a wider role as CoMO’s Americas leader, while Jamie Schanbaum rebuilt her life in public view. KRWG reported that by 2012 she was already an internationally ranked cyclist, showing school health staff the gold medal she won at the 2011 USA Cycling National Championships and insisting, when asked about her amputation, that “There’s really nothing I can’t do.”

Their latest work shows how the message has evolved from one survivor’s story into a continuing prevention effort. GSK named The J.A.M.I.E. Group among 16 recipients sharing $2 million in 2025 COiMMUNITY grants, and Jamie and Patsy Schanbaum said the money would help them raise awareness with officials in New York. Their statement summed up the case they have been making for years: “Meningitis can change lives in a matter of hours.” For parents, the practical advice remains to check school and university vaccine records, know that sudden fever, headache, stiff neck, confusion, vomiting or a dark rash need urgent medical attention, and ask a clinician not only about the routine MenACWY schedule but also whether MenB protection makes sense before a teenager leaves for campus.