Attending the Bleeding Disorders Conference doesn’t benefit only me

My recent columns have focused on my experience at the National Bleeding Disorders Foundation’s (NBDF) annual Bleeding Disorders Conference, held Aug. 21-23 in Aurora, Colorado. I wrote about fun times with colleagues and new friends, and offered my gratitude to salespeople who truly care. I shared that my wife, Cazandra, and I led a seminar called “Share Your Story, Shape Your Future,” where we emphasized the importance of sharing our stories.

This week, I want to discuss additional benefits of attending the conference. The experience taught me a great deal: I not only gathered information about advancements in the bleeding disorders world, but I also learned lessons that empower me to be the best father, husband, and leader I can be. Cazandra and I also found some time to reconnect, steal a few moments to laugh, and strategically plan for our future.

But the benefits extend far beyond myself.

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September 19, 2024 Columns by Joe MacDonald

New experiences at this year’s Bleeding Disorders Conference

Sharing what I’ve learned

At the conference, I attended multiple workshops that equipped me with vital updates on bleeding disorder research and treatments. I was eager to share these exciting developments with my sons, Caeleb, 19, and Julian, 29, who live with hemophilia. I hoped the knowledge would empower them and make it easier for them to manage their condition.

While there’s no cure yet, the advances in treatment are promising. It’s encouraging to see how far we’ve come since Julian’s diagnosis in 1996, and it fills us with hope for the future.

I will also continue to reach out to the local bleeding disorders community and share with other families what I learned at the conference. Doing so equips them with the information necessary to treat their loved ones. I firmly believe that learning about new ideas and the latest treatment options will allow for more innovative and informed medical decision-making. I’m grateful to be able to share news and resources.

Promoting advocacy

The conference also underscored the importance of lobbying our local, state, and national legislators. It’s crucial to equip our leaders with pertinent information as they craft healthcare legislation.

During the seminar that Cazandra and I led, I held up a picture of my sons. I explained that I’d shown the same photo to my representatives from New Mexico while participating in the NBDF’s Washington Days. During that visit in D.C., I shared how hemophilia affects these two young men and what kind of care and treatments they need access to. I encouraged everyone in the room to take pictures.

We lobby for people, not a diagnosis. It is important to show our representatives how proper treatment helps a community.

Fostering community

One of the most significant benefits of attending conferences is the sense of community they foster. These events introduce us to people from different parts of the country, expanding our world and our support network. Each time I attend, I return home with a deeper appreciation for the challenges and triumphs of families living in other states. We form relationships, promise to keep in touch, and help one another navigate the complexities of bleeding disorders. This sense of community is a powerful reminder that we are not alone.

We all struggle to find ways to make our lives more meaningful while holding loved ones in our hearts and minds. A chronic illness does not have to isolate us. Sharing information connects us, empowers us, and enhances our quality of life.

I always leave the conference feeling stronger and more hopeful, and it is a joy to share that with those who couldn’t attend.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.