The Internet can be a sort of Alice-in-Wonderland kind of space. Beautiful wonders followed or superseded by sheer horrors. For example, when we notice that we or our loved ones are experiencing certain symptoms, we can research them online and find links to all sorts of pages, but discerning whether the information provided on those pages is reliable or unreliable is another story. It takes a special kind of Internet literacy and a bit of luck to know which information is accurate and steeped in authentic evidence and which is… well… fake. For Tau and Eoin, as for many other parents of children who receive confusing and sometimes frightening medical diagnoses, the Internet turned out to be the tool that connected them with their greatest source of education and support
Photos care of Tau O'SullivanIn Tau and Eoin’s case, when their daughter Lia was diagnosed with the degenerative condition Charcot-Marie-Tooth (CMT) Type 1b at around age two, they had no idea where to start learning about how best to help their daughter thrive. Their research ultimately led them to the Charcot-Marie-Tooth Association (CMTA), whose mission is to rid the world of CMT. As things stand now, approximately one in 2500 people have CMT, totaling around 2.8 million worldwide and making CMT the most commonly inherited peripheral neuropathy. Since symptoms vary, there are likely many more people who have CMT but have either been misdiagnosed or are simply unaware.
Photos care of Tau O'Sullivan
CMTA introduced Tau, Eoin, and Lia to the CMT community’s invaluable support, connection, and knowledge. In addition to providing free webinars on topics such as occupational therapy for those with CMT, the CMTA actively funds research to find a treatment or cure for CMT. Lia’s family is pleased to give back to this nonprofit organization that so powerfully supported her and her family when they were in crisis seven years ago, and one way they do that is through Tau’s co-leading the San Francisco Bay Area branch these past four years. Since 2015, their branch has organized an annual walk to raise awareness and funds during September, CMT Awareness Month, and in just four walks has raised more than $100,000. As if coordinating this annual walk is not sufficient, Tau is also training for her first marathon, taking place in November; the money she raises participating in this marathon will be split between CMTA and a nonprofit a niece of hers founded in the Kingdom of Tonga, where Tau was born, that supports kids with autism and their families.
Not ready to lace up your running shoes but still want to help families whose children get a diagnosis like Lia’s avoid the proverbial Internet rabbit hole and promptly get help for their children? You’re in luck! You can support the CMTA’s mission to create a world free of CMT right there from your smartphone. Use checkout code GIVE930 now to donate 10% of your purchase price to the Charcot-Marie-Tooth Association. You can also find CMTA on Facebook, Instagram, and Twitter.