Author Archives: Hawken Miller

The Power of a Duchenne Smile

We can all smile, but there’s one type of smile that shows genuine positive emotion and is nearly impossible to fake. The zygomaticus major muscle in the cheek pulls the lips upward while the orbicularis oculi around the eye activate, wrinkling the outside corners of the eyes. It’s true happiness…

Rare Disease Day Panel Opens Window to Patient Experience

BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

Duchenne MD Helps Me Develop Close Relationships

Living with Duchenne muscular dystrophy has plenty of downsides, such as having to use a wheelchair and a BiPAP machine, dealing with fatigue, and wearing night splints, among other things. But if you’ve read my column for a while, you’ll know I like to look on the positive…

Q&A With RARE-X Disease Data Platform Founder, Nicole Boice

The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…

I’m Gifted Because of Duchenne Muscular Dystrophy

No matter who you are, life will throw you seemingly impossible challenges. It will make you question everything. If you believe in God like me, I’m sure you have asked, “Why are you letting this happen to me?” In reading a Christian book titled “Faith That Engages the Culture,”…

Rare Disease Day Events Bring Awareness, Equity to Patients

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

My Parents Have Helped Me Overcome Duchenne MD

A 7-mile hike with a 1,000-foot elevation gain was on the schedule for our second day of camping at Point Mugu State Park near Malibu, California. I was with our small Boy Scout Troop 911, which operated out of my elementary school in Huntington Beach. It was a…