11 Mar
  • By Jessica Yanez-Perez
  • Cause in

CureDuchenne Sets Calendar for Workshops, Sessions and ‘Futures’ Conference

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 […]

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11 Feb
  • By Matter Now
  • Cause in

Why My Patient Advocacy Organization Is Investing In CRISPR

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 […]

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11 Feb
  • By Jessica Yanez-Perez
  • Cause in

Defying the Odds of Living with Duchenne, Decade After Decade

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 […]

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30 Nov
  • By Matter Now
  • Cause in

West Virginia Mom of Duchenne Boy Struggles to Make Ends Meet

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 […]

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30 Nov
  • By Matter Now
  • Cause in

The Gene-Edited Babies And CRISPR-Cas9 Controversy, Explained

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. […]

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12 Oct
  • By Matter Now
  • Cause in

Local Teen Researching the Disease He Lives With

 UNIVERSITY CITY (WPVI) — Philadelphia’s well-known for medical research, with thousands of people in our city working in that field. Recently, a high schooler got time in a professional lab, trying to find a cure for the disease that he lives with. Yuva Gambhir has been getting a whole new look at Duchenne muscular […]

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10 Oct
  • By Matter Now
  • Cause in

Funding Model Sets Rare-Disease Nonprofit Apart

ORANGE COUNTY BUSINESS JOURNAL Paul Miller, co-founder of the CureDuchenne nonprofit group and chief operating officer of Irvine-based Patman Meat Group, recalls the first time he met the woman who would become his wife and the mother of their son, Hawken…

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14 Sep
  • By Matter Now
  • Cause in

NFL Star Clay Matthews Uses His Platform for Duchenne Awareness

ADVOCACY For the past eight years, the Green Bay linebacker has been using his platform for good by raising awareness of Duchenne and supporting CureDuchenne in its efforts to drive progress towards a cure. Clay Matthews, the Super Bowl-winning linebacker for the Green Bay Packers, became a part of the rare disease community almost by chance. […]

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