May 23, 2019May 22, 2019

Moving into the Future: Assistive Technology Can Make a Difference

columns, Living, Learning, Thriving - a Column by Ralph Yaniz

Many people love to travel. The issue of wheelchair accessibility on airplanes is important. Just as important for those of us who don’t use a wheelchair but are looking ... Read more

May 22, 2019May 22, 2019

PPMD Awards $100K for Immune Cell Profiling Research for Duchenne and Becker at UCLA

News

The Parent Project Muscular Dystrophy (PPMD) has awarded a $100,000 grant to a UCLA professor to support research on the signature profile of immune cells in patients with Duchenne and ... Read more

May 21, 2019May 17, 2019

Choosing the Right Dog Breed for My MD Lifestyle

columns, You, Me and MD - a Column by Leah Leilani

Prior to my diagnosis, my family spent much more time traveling than we do now. Even though I’ve never traveled outside California, I still have memories of long, scenic ... Read more

May 20, 2019May 17, 2019

Traveling the World Is Possible, Even with Duchenne

columns, Hawk's-Eye View - a Column by Hawken Miller

In a past column, I wrote about focusing on the things I can do rather than those I can’t. One of the things I can do is travel, and ... Read more

May 17, 2019May 17, 2019

Sarepta Acquires Rights to Novel Gene Therapy Candidate to Treat Limb-Girdle MD

News

Sarepta Therapeutics is acquiring an investigational gene therapy program focused on calpain-3 for the treatment of limb-girdle muscular dystrophy type 2A (LGMD2A). The candidate therapy was developed by the Research ... Read more

May 16, 2019May 14, 2019

Let’s Prepare Ourselves for the Trials of a Lifetime

columns, Living, Learning, Thriving - a Column by Ralph Yaniz

Research and clinical trials Science is closer than ever before to finding treatments and cures for many rare illnesses. An important topic that I’d like to address is the ... Read more

May 15, 2019

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

News

With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been ... Read more

May 15, 2019May 15, 2019

Duchenne Teen Hits the Runway at Las Vegas Fashion Show

News

Joey Chorzewski has Duchenne muscular dystrophy, a neuromuscular disease that makes him different from most of his peers in Marshfield, Massachusetts. But in other ways — like wanting to ... Read more

May 14, 2019May 10, 2019

My Search for a Comfortable Bra as a Woman in a Wheelchair

columns, You, Me and MD - a Column by Leah Leilani

As women, we reach a point growing up when we must enter the intimates section of the department store to begin shopping for bras. Finding a comfortable bra is ... Read more

May 13, 2019May 9, 2019

Video Games Let Me Be Competitive Without the Need to Be Physical

columns, Hawk's-Eye View - a Column by Hawken Miller

I’m not going to be an athlete — and that’s OK. I’ve found a competitive outlet through video games. While sports helps to build friendships and engage in teamwork ... Read more

May 13, 2019May 13, 2019

#AANAM – FSHD Patients ‘Very Enthusiastic’ About Taking Part in Clinical Trials, Research Suggests

News

People with facioscapulohumeral muscular dystrophy (FSHD) are “very enthusiastic” about participating in clinical trials and studies, according to researchers, who report that foot and leg, and shoulder and arm ... Read more

May 13, 2019May 13, 2019

PPMD Launches Pilot Duchenne Newborn Screening Program in NY

News

Parent Project Muscular Dystrophy (PPMD) has launched a pilot program to screen newborns in New York state for Duchenne — one of the most common forms of muscular dystrophy. ... Read more