In the Twinkling of an Eye – a Column by Joe MacDonald

August 27, 2020August 24, 2020

How to Avoid the Shame and Blame Game

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

I will never forget the first time the Hemophilia Federation of America asked me to facilitate a discussion group for parents of the newly diagnosed, at the federation’s annual ... Read more

August 20, 2020August 18, 2020

My Takeaways From This Year’s Bleeding Disorders Conference

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

Despite the challenges associated with holding a large conference online, the National Hemophilia Foundation did a fantastic job at this year’s Bleeding Disorders Conference by virtually presenting participants with ... Read more

August 13, 2020August 11, 2020

A Letter to My Sons

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

I remember the first time I put my hand in your hand. You seemed to smile out of a sense of familiarity. You knew me in a way that ... Read more

August 6, 2020August 3, 2020

National Hemophilia Conference Provides Hope for the Future

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

Saturday afternoon marked the opening of the virtual edition of the National Hemophilia Foundation’s Bleeding Disorders Conference. I immediately missed the in-person experience, meeting old friends, walking through the ... Read more

July 30, 2020July 28, 2020

Our Virtual Connectedness

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

As we continue to practice social distancing, I find it exceedingly difficult to stay connected to brothers and sisters in the hemophilia community. I gain strength and hope from ... Read more

July 23, 2020July 20, 2020

Beyond Diagnosis, We Found Community

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

I am the first person to insist that a diagnosis does not define my children. In my home, we never call our children hemophiliacs, rather we focus on the ... Read more

July 16, 2020July 15, 2020

We Are the Experts of Our Own Stories

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

At times I struggle with documenting my journey as a caregiver for a loved one with a bleeding disorder. I can’t offer medical advice because I am not an ... Read more

July 9, 2020July 6, 2020

The Roles We Play as Caregivers

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

Two weeks ago, my family moved back to New Mexico. Today, I find myself attempting to bring order to my office. I started matching books with the subject matter ... Read more

July 2, 2020June 29, 2020

Accepting a Hemophilia Diagnosis Was a Question of Faith

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

I entered my 3-month-old son’s room and stared at him as he peacefully slept in his cradle. Streetlights shined through the window into the darkened room. I glanced out ... Read more

June 25, 2020June 23, 2020

Managing Chaos as a Family

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

If there is one word in the English language that drives me batty, it’s “chaos.” It implies a lack of control and an inability to stand on firm ground. ... Read more

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