Today's Rare Disease Day. There's sometimes a particular weightiness to life with a rare disease. All the appointments, emergencies, traumas, doctors, therapists, medicines, opinions, schedules and upset schedules. My touchpoint is being mom to my precious girl with Wiedemann-Steiner Syndrome (WSS). You'd have to spend a day or week shadowing me to know what it's really like. Doesn't that sound alienating? As though you couldn't possibly imagine if you're not living it? Well, maybe. But think about a time of immense grief you've lived through, or a time when your world seemed to be falling apart around you and it felt like everyone else was completely unaffected. I suppose it's a bit like that. You might have thought that those around you couldn't possibly know how that experience felt to you. A couple weeks ago, I started keeping a list of all the extraordinary things that happened in my life due to my daughter's rare disease. I learned a c
We kicked off our New Haven pilot with a press release January 29th. That garnered a bit of media attention and interest from users across the country when Disability Scoop picked up the story. I'm trying to stay laser focused on the goals of this pilot: 1) determining the critical mass of users and businesses necessary for the marketplace to be of interest to these two sides of the marketplace 2) refining a scalable business model (in plain speak, figure out how we'll make money) Even though I'm focused on New Haven, it's gratifying and validating to hear from users across the country that they want this resource in their town, too. The online marketplace is open to users everywhere to recommend businesses anywhere. While we're only doing accessibility reviews in New Haven right now, I'm dreaming up how to make our accessibility reviews scalable. That'll help us reach more geographies sooner.