Rebecca

[Image Description: Headshot of Rebecca, smiling, looking into the camera. She’s wearing vibrant and dynamic aqua, blue and chartreuse colors.]

I’m a life-long ponderer, nerd, reader, artist and problem-solver. I love all the things that go along with that – consuming information, writing to sort my mind out, talking with and learning from others, making things, trying things, organizing things.

I live with severe chronic illnesses that significantly limit how often and for how long I can do those things. I have severe Myalgic Encephalomyelitis (sometimes know as Chronic Fatigue Syndrome or ME or ME/CFS), which is a complex, debilitating, neuroimmune disease that is still poorly understood. I also have Postural Orthostatic Tachycardia Syndrome (POTS), a disorder of the autonomic nervous system, Mast Cell Activation Syndrome, and Fibromyalgia, all of which are common in folks with ME. For more information or resources, head on over to Chronically Rebecca: Chronic Illness Resources.

I spend my time at home in Ithaca, NY with Marigold Dog and Sadie Cat. I rely on professional aides and a dedicated network of friends to help make our lives work, from grocery shopping to cooking to making the bed to dog walking. I am passionate about supporting other folks with chronic illness improve their quality of life. I network with and provide direct support to others online, spread awareness among non-disabled folks, and advocate for policy changes and research funding.

I can usually be found in bed, on my phone, watching TV, reading on my tablet, or taking a nap.

Before leaving the workforce, I spent my career in the world of non-profit management. My depth of experience is in high-level fundraising, with a focus on prospect development, research and management. I know a lot about identifying prospects, engaging with them, and asking folks for money. I’m passionate about it, and happy to talk with folks and offer limited advice.

Pronouns: she/her.

 

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