The Audacity of Grief

Can we talk about grief for a moment? We all experience loss, and each loss impacts us differently. There is no rule book for processing grief, and that’s a beautiful thing – processing grief is unique to the individual it happens to. Grief is defined as a specific type of suffering that is often tied…

Read More

The Mavacamten Marathon

Camzyos™ Approval This is an exciting time for the HCM Community.  The FDA has approved Mavacamten under the brand name CAMZYOS, the first-in-class medication for symptomatic obstructive hypertrophic cardiomyopathy and the first drug developed specifically for HCM. Read the press release here CAMZYOS Patient Portal CAMZYOS Medication Guide CAMZYOS U.S. Prescribing Information CAMZYOSTM REMS (Risk Evaluation and Mitigation Strategy) Our…

Read More

Student Athlete Screenings – COVID

We recently became aware of a policy of a New Jersey family medical practitioner (in your region) that has the ability to create significant misinformation, confusion, and financial hardship.  New Jersey Statue C.18A:40-41.6 clearly communicates the role of student-athlete preparticipation physical examinations.   The Hypertrophic Cardiomyopathy Association, HCMA,  and other organizations in NJ worked to pass…

Read More

The day that changed my life: June 12, 1995


The day that changed my life was June 12, 1995, a Monday. The phone rang at 5:50am, which is never a good thing. I managed to roll over with my 8-month pregnant belly and answer the phone on the second ring. The voice was familiar but panicked it was my mother. “She is not breathing…

Read More

Lisa, we have your heart. How soon can you be here?

Lisa, age 12

So there I was holding my heart in my hands while a new heartbeat was in my chest. Talk about surreal moments! The path that led to this moment encompasses 36 of my 48 years on this earth and in this one moment, I came face to face with the very thing that I had hated, feared, and loved… my heart.

Read More