We’re a family that has the good fortune of traveling often. It’s not always a grand journey — most trips are just a few miles from home. One constant during our travels is a set of tiny traveling notebooks — one in my purse and one in my husband’s pocket.
Stories from the Road
— Ann Kendall
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.
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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…
When my daughter was little, she had the most amazing dance teacher, Jenna. Jenna was a mom of boys who loved the rough and tumble, but her dance studio was all about learning to move young bodies with grace and fluidity. While we no longer head off to Jenna’s classes…
People with bleeding disorders face a variety of challenges. Healthcare access is a constant concern and covers myriad issues, including political and financial stability and regulatory and provider awareness. Most of us spend a fair amount of time educating and advocating for these issues. One thing we don’t often talk…
For at least 30 minutes nearly every day, while buzzing along on our YMCA’s treadmill or bike, I’m captive to the machine’s built-in cable and Wi-Fi. Though we’ve gone to “the Y” for many years, I’m still fascinated that I can watch just about any program I want, provided I…
Recently, I’ve been reading a lot of online content about hemophilia on forums dedicated to the disease and in articles. It could be because my Google Alerts and scholar searches are sending me plentiful links to browse. I’m noticing some consistent themes online: Moms are desperate for solutions;…
Last week, I read Gill Paul’s latest novel, “The Lost Daughter.” The book is a historical fiction account of Russia’s Romanov family. It is well-known that the Romanovs and hemophilia are connected, but I had no expectation that bleeding would play into the plot. Near the beginning of…
I recently noticed that our healthcare providers offer virtual visits as part of our current insurance. I was fortunate last week to attend an event hosted by the Virginia Quality Healthcare Network. The presentation featured a talk on telehealth by Dr. Karen Rheuban, co-founder and director of…
About this time every summer, my social media feeds begin to fill with lots of smiling faces from hemophilia camps across the country. Photos showing kids pursuing myriad activities — from fishing to wall climbing to crafting — share a common theme. They are fun, relaxed kiddos doing what…
I recently had the opportunity to spend the afternoon with a group of teens from our local bleeding disorders organization, HACA, which stands for Hemophilia Association of the Capital Area. Some of these kids have gone to camp together for years, and some were brand new to the group.
The toughest part about moving to a new city or state is locating health providers that are covered (most likely) by a new insurance plan. It’s difficult for families with hemophilia, like ours, to find pediatricians and internists. But dentists are by far the most challenging to locate. Fellow…
Many years ago, while working in the association management world, I had a director who challenged his managers (including me) to calculate the “true” cost of every program we proposed. My director’s challenge was not merely a budgetary task; it was an exercise in extreme critical thinking that moved us…
I once spent an entire summer reading Emily Dickinson’s work and analyzing it, from the literal meaning of her words to the historical context of her work and the constraints under which she wrote each line. At the end of that summer, I was positive about one thing when…
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