30 Nov
  • By Matter Now
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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 May McCarthy
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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
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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
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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
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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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14 Sep
  • By Matter Now
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How an NFL Player’s Advocacy for Duchenne Is Touching the Lives of Children

ADVOCACY Most people know Clay Matthews as the superstar Green Bay Packers linebacker with long, blonde hair and a trademark predator-sack celebration — I know Matthews as a person with a soft heart and a real passion for evoking change. Matthews is a champion for boys with Duchenne muscular dystrophy.  Duchenne is a progressive muscle-wasting disease […]

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