Be sure to register for the Community Day at this year's Ehlers-Danlos Society Scientific Symposium, Sunday, September 21st. For those who are looking for an excuse to go to Toronto, you can attend in person. But you can attend virtually -- from the comfort of your own home, anywhere in the world -- and the ticket is $50. This event is an important one ... because the scientific symposium (multiple days, just prior to the community day) will bring together scientists and clinicians from all over the world to talk about new EDS research and to make headway on the "Road to 2026" -- the initiative to revise the diagnostic criteria for EDS. By attending the community day at the end of the conference, we can learn more about what's happening in our community and what changes may be afoot for the criteria. We have some insider info about what's being unveiled and can assure you that you don't want to miss this. Did you know that scientists and clinicians are overwhelmingly leaning toward a new theory about hEDS? We have long believed that, like vEDS and other types of EDS, hEDS is/was a genetic connective tissue disorder. But we may be abandoning that belief in favor of a theory that hEDS is actually a neuroimmune disorder in which -- instead of being born with or making bad collagen -- something is "eating up" our collagen. (We're quoting Dr. Chip Norris there.) This could be game-changing. Treat the immune dysfunction and treat everything. It's an incredibly exciting prospect. It appears that there's a reason, after all, why it has seemed impossible to identify a genetic marker for hypermobile EDS -- perhaps because the issue wasn't entirely a gene mutation (maybe just a propensity for an immune disease). And now it all makes sense -- why MCAS is the "head" of the hEDS monster and not the tail. What else is on the horizon? Many people who have been denied an EDS diagnosis and given an HSD diagnosis instead may be getting an EDS diagnosis finally -- thanks to new diagnostic criteria. Some of us are going to lose a label and gain a new one. And in the end, millions more people may get the validation, community, care, and hope they deserve. Go register for the conference. The Community Day page is confusing to find, so we're providing the link. Don't get tangled in the full symposium registration and accidentally pay $650 for something you can get for a fraction of the cost. ;-) See you on the Whova app or in Toronto this September! (fb)

Congress just passed the OBBBA and sent it to Donald Trump's desk to be signed into law. We don't have adequate words to convey our disgust, sadness, and fear on behalf of the portion of the hypermobile community that is unable to work and that relies upon Medicaid for their healthcare coverage. The OBBBA, according to an article just published by the Center for American Progress, requires individuals receiving or applying for Medicaid "to prove that they are working, engaging in community service, or receiving work training for at least 80 hours per month—or that they are enrolled in school part time—unless they qualify for an exemption. Medicaid enrollees who are trying to find a job, are having difficulty finding employment, or who lack reliable transportation to work would be penalized under this requirement. That includes at least more than 2.6 million adults with disabilities who don’t have SSI or SSDI and have difficulty working due to disability or illness." A huge portion of the EDS community represents working-age patients who are currently unable to work due to their illness, many of whom are not considered "disabled" by the federal government. Lack of federal disability status happens for many reasons: Some people have applied and are awaiting approval, some have applied and been denied, some have not yet had the chance to apply, and others choose not to apply because they believe they can come out slightly ahead by freelancing or working part-time, as their health allows. In all cases, these patients are either unemployed or underemployed. Many are heartbroken to have lost their careers and many are struggling financially. And now the federal government is going to punish and shame them for being sick. It is estimated that the changes and cuts outlined in the OBBBA (what we are calling the big UGLY bill) will take away healthcare from 16-17 million Americans. This is the single largest decimation of healthcare access in the history of the United States and it targets the most vulnerable populations. What will these cuts do to "help" the federal government? They will fund tax breaks for billionaires. (fb)