Our Tiny Traveling Notebooks
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…
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.
Featured Post
Would You Choose Another Path?
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…
Read more
Clap After Every Pirouette
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…
Innovation Required: Taking Care on the Road
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…
‘Wash Your Face First’: Lessons in Self-care for Caregivers
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…
Provider Education and Outreach Are What Our Community Needs Now
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…
Hemophilia in Fiction: Where Is It?
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,…
Could Telehealth Create New Opportunities for Hemophilia Care?
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…
The Summer of Love Is Alive and Well
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…
Teens Using the Gift of Gab for Action
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…
When You Don’t Have to Be the First
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,…
Posing a Challenge: The True Cost of Mental Healthcare
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…
Writing Out Chronic Worry Doesn’t Have to Mean Writing About Worry
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…
