December 18, 2018 / Community

A strong heart — is more time with my family

I hope this note finds you and your family enjoying the holiday season! I am a 41-year-old with Becker muscular dystrophy. Until recently, I served on PPMD’s Adult Advisory Committee (PAAC), and I’m extraordinarily proud of the work the group does on behalf of everyone living with Duchenne and Becker. I am also a son, a husband, a brother, and, most proudly, a father.

As I have gotten older, and especially as I took over the responsibility for my own healthcare, I have been incredibly vigilant about the state of my cardiac health. I know the toll that the progression of this disease can take on one’s heart. And PPMD shares that concern. That’s why I hope you will help support the groundbreaking cardiac research efforts PPMD continues to pursue. Help PPMD expand its Cardiac Initiative by donating today. All gifts will be doubled until PPMD reaches its ambitious goal of $550,000.

Heart issues don’t just affect some people with Duchenne or Becker; they affect all people with Duchenne and Becker. I’ve known for years that I needed to focus on keeping my heart healthy in order to live as long as possible. As an adult, I have taken control of my healthcare (cardiac and otherwise) and have been proactive with my health — going to regular appointments with three different cardiologists, taking my medications as prescribed, and yearly echocardiograms. In short, I have pursued all recommended interventions to protect and preserve my heart.

But when I became a father last year, my focus on my cardiac care intensified. My goal is to be the best father I can, and to be here for my daughter as long as I can. That means making sure I take care of myself the best I can. For me, that means paying attention to the current landscape of cardiac care and research, looking out for new and innovative treatments that might be developed, and, most importantly, planning ahead to a time when my heart health might further decline and additional interventions might be necessary.

PPMD understands this and is committed to helping us. PPMD’s ongoing Cardiac Initiative is focused on optimal care, interventions, and research for heart health in Duchenne and Becker. That includes carriers, like my daughter, who might someday manifest cardiac symptoms.

PPMD wants to expand their Cardiac Initiative so they can further explore and hopefully discover new and better cardiac treatments for everyone in our community. Help PPMD this holiday season. Make your gift before December 31, and it will go twice as far.

When you start to comprehend your diagnosis, really understand it, you start to think about what you want to accomplish in life, knowing that, in some ways, it will be more difficult for you than for your peers. But then you meet a community like ours that inspires you, drives you to do anything you want to do, and be anything you want to be. I feel privileged to be a part of the community, to have the friendships I have, and to benefit from the tireless dedication of not only the PPMD team, but also the medical professionals who invest so much in finding a cure for Duchenne and Becker — and caring for us in the meantime.

But to fulfill the dreams of everyone living with Duchenne and Becker, to treat everyone, we have to make sure our hearts are strong enough. Pat and the PPMD team understand that. For nearly 25 years they have been on the frontlines, insisting that doctors, researchers, clinicians, and industry pay attention to our cardiac health. Please support this critical Cardiac Initiative on behalf of all families living with Duchenne and Becker — and donate today!

On behalf of my family, we wish you happy holidays and a wonderful New Year! Thank you for taking the time to read this note.


Mario Damiani

P.S. December 31 will be here before you know it! Make your donation today and help PPMD expand this Cardiac Initiative. All donations will be doubled until PPMD reaches their goal of $550,000.


Join Our Mailing List