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This week I was an American girl in an Indian bus listening to Senegalese music.

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Rare Disease Day 2024

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
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Startup Day 875: piloting in New Haven

Iteration is emblematic of startups. For example: From last year's pilot , we learned that parents and adults with disabilities were looking for recommended resources.  We built the Empowered Together app and tried crowd-sourcing those recommendations.  In our New Haven pilot, we're bringing database building in-house by listing accessible food, arts, and recreational businesses in greater New Haven.  Thankfully, we have thought partners in this endeavor at the City of New Haven and at community disability orgs. We are working with a Quinnipiac student and awaiting word on additional grant funding. We're taking the right next step in changing the social system to be accessible and inclusive of People with Disabilities.
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Year End-ish Post

I've been "keeping advent" this season in the way one might keep the Sabbath or Lent -- intentionally under scheduling, decluttering, opting out of historic holiday obligations, fasting -- and I think it's having an effect. All this advent keeping makes me long for the feasting of Christmas. I eagerly yearn for Monday when all heaven breaks loose to celebrate Christ's advent on earth. Advent keeping has also allowed me to be still and recognize patterns that have played out over the last year. 2023 has been tough. I wonder who else feels this; I know I'm alone in feeling the weight of an unpredictable world. My very body tells the tale of stress and years of inattention as I work through intense lower back pain. Vocationally I've strained toward product-market fit with Empowered Together's marketplace. I'm left longing for a co-laborer in this effort. While I remain deeply grateful for my family, I feel the pressures of parenting a child with a dis
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