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.
Stories from the Road - a Column by Ann Kendall
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…
We all enter history at a different point; our entry into the timeline of the world marks where the future of us begins as individuals and families. Sometimes, we accelerate into the on-ramp that launches us, and sometimes we bumpily move toward our mark. On our first date, my now-husband…
Recent Posts
- New deal aims to bring BBM’s hemophilia A gene therapy to China
- Bleeding.org LIVE! turns the spotlight our way, but being seen is the first step
- I choose to share the power of my story with my blood brothers and sisters
- My son with hemophilia is living his dream — and mine
- China’s first hemophilia B gene therapy now approved in Macao