Ann is an English professor and freelance writer with strong ties to the bleeding disorders community. She believes that advocacy is an essential skill for all connected to rare diseases; and that together, we have the power to impact and lead change by sharing our individual and collective stories, whether to meet personal needs with our medical providers or through involvement in policy work and legislation.Usually, as the year comes to a close, we turn our attention to resolutions. It’s often a reflective time, when the prior year’s events and actions come under scrutiny. The most common resolution usually has something to do with health and fitness. But 2020 is far and away a different…
It started the fall of my daughter’s sixth-grade year in school. While I had listened to DJ Elliot Segal of the radio talk show “Elliot in the Morning” for nearly 20 years by then, I’d done so mostly solo. My husband found no value in the show, and I…
Long a food literature devotee, I continually marvel at the seeming effortlessness with which authors, home chefs, and Michelin triple stars approach the kitchen. Their sense of matter-of-fact wonder at gathering simple or impossible-to-find (except in a French market) ingredients simultaneously fills me with awe and consternation. How did these…
Fall has set in, and the leaves around us provide a colorful daily show as we creep out into the world. The endless pelting of falling acorns constantly startles. Is the roof caving in? Is someone banging on our front door? How many acorns can there possibly be up there?…
On a recent Sunday afternoon, cabin fever got the best of my family and we headed out to see where the road would take us. Our parameters were straightforward: It had to be within an hour, and the destination had to involve water. Because local traffic has been nearly absent,…
I first noticed the survey as I headed down the street while the sun was rising last Sunday morning. A rock painted bright orange with the words “poll of the day” anchored a sheet protector. Inside, a green index card asked: “Would you rather have a lifetime subscription to Netflix…
“A River Runs Through It” is one of my favorite movies, but calling it that doesn’t conjure up just how deeply I feel about it. This movie is more than a favorite — it is like a cherished dream. With Robert Redford’s voice richly narrating the story of…
A few weeks ago, the news media broadcasted a video of Jill Biden — spouse of presidential hopeful and former vice president Joe Biden — physically blocking a protester in California from coming into contact with her husband. Not only did Jill put herself in between her husband and the…
I met my husband on the golf course. Now, one of my greatest joys is watching my daughter learn to play at that very same course. It is where I feel most at home. The course is not a relaxing set of fairways we see on Sunday afternoon broadcasts with…
Science projects at home are often cause for consternation. We’ve all been there: Where do we find the supplies, where do we set up, and what sort of mess will this make? These are the questions of the familiar parental refrain. But every now and again, one comes along that…
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