More than $900,000 will go to support CureDuchenne’s mission to find a cure for Duchenne muscular dystrophy and support patients and families affected by this rare genetic disease, all thanks to Orange County’s wine connoisseurs, philanthropists and business leaders who gathered March 2 for the fifth annual Napa in Newport to benefit the nonprofit. Read the […]
Scientists are testing nearly two dozen treatments that might stop the disease. But enrollment in the trials is very restricted, and few children qualify. Lucas was 5 before his parents, Bill and Marci Barton of Grand Haven, Mich., finally got an explanation for his difficulties for standing up or climbing stairs. The diagnosis: muscular dystrophy. […]
When their only son, Hawken, who is now 22, was diagnosed in 2002 with the progressive, muscle-wasting disease Duchenne muscular dystrophy, Paul and Debra Miller took swift action. Read the full article here.
CureDuchenne, one of the nation’s leading Duchenne muscular dystrophy (DMD) charities, is sponsoring 30 events across the U.S. this year to educate patients and their families about all aspects of the neuromuscular disease. “Out motto is ‘leave no boy behind,’ so we want to make sure we have a format that works in smaller, less […]
In last year’s action film “Rampage,” which featured Dwayne “The Rock” Johnson, CRISPR gene-editing technology turns a gorilla, a wolf, and a crocodile into monsters the size of skyscrapers that destroy Chicago. If you missed the movie, you may have caught wind of He Jiankui. Near the end of 2018, the Chinese scientist reported having used CRISPR […]
When it comes to Duchenne muscular dystrophy (DMD), Leonardo Feder knows he’s among the lucky ones. A resident of São Paulo, Brazil’s largest city, Feder was diagnosed with Duchenne at age 6 and immediately began taking corticosteroids as well as heart medicine and supplements. “I’ve been well-medicated all my life, so I’m fine,” the 33-year-old said […]
In November 2016, two San Diego families received the same devastating news about their little boys. Four-year-old Yannick Etienne and 5-year-old Marko Filenko were each diagnosed with Duchenne muscular dystrophy, a progressive muscle-wasting disease that would one day take their lives. Read the full article here.
Like many mothers of boys with muscular dystrophy, Deborah Hall hasn’t had an easy life. Hall, the daughter of a chemical engineer and a stay-at-home mom, was one of six siblings growing up in Boaz, West Virginia. When her younger brother, John, was 3 years old, doctors diagnosed him with Duchenne muscular dystrophy (DMD). Twenty-five years […]
CRISPR-Cas9 has the ability to change everything about our world. Here’s why it’s awesome and why it’s scary. Outrage continues to grow over the news that Chinese scientist He Jiankui claims to have used gene-editing technology called CRISPR-Cas9 to create embryos that he then transferred into a woman, resulting in the birth of twin girls. […]
DURHAM – Back in 2003, new mother Debra Miller with her husband, Paul, founded CureDuchenne after their only son was diagnosed with Duchenne, a rapidly progressing form of muscular dystrophy. No doubt, it’s been a long haul working to find the best therapies for the disease. But there is now reason to be even more hopeful. […]
CureDuchenne’s Vine Time: Napa in Newport
The Orange County Register
Two families building a future through shared tragedy
San Diego Union Tribune