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.

Articles by Ann Kendall

On the Road with Ross: Driving in the Winter

Lately, I’ve spent a lot of time driving on Interstate 95. I barely like driving across town, let alone spending eight or more hours a week on one of the most congested stretches of highway in America. But I’ve joined the legion of long-distance commuters on the East Coast. Several…

Moving from Darkness into Light

This month has brought a holiday rush of hemophilia news on potential new treatments, studies, and acquisitions — all of which serve to raise hope during this solstice season, as we move past the shortest day of the year. Solstice can be a…

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 set of tiny traveling notebooks — one in my purse and one in my husband’s pocket.

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 move young bodies with grace and fluidity. While we no longer head off to Jenna’s classes…

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 fair amount of time educating and advocating for these issues. One thing we don’t often talk…

‘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 years, I’m still fascinated that I can watch just about any program I want, provided I…

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 me plentiful links to browse. I’m noticing some consistent themes online: Moms are desperate for solutions;…

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, but I had no expectation that bleeding would play into the plot. Near the beginning of…

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 wall climbing to crafting — share a common theme. They are fun, relaxed kiddos doing what…