29 Aug
  • By Alicia Clough
  • Cause in

School: It’s All About Balance

Guest blog by Tiffany Cook, CureDuchenne Family Resource Manager As a school-based Speech-Language Pathologist for more than 20 years and a Mom of a 17-year-old son with Duchenne muscular dystrophy, I can truly identify with the importance of conserving energy. For individuals with Duchenne muscular dystrophy, conserving energy involves physical energy as well as mental […]

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06 Jul
  • By Alicia Clough
  • Cause in

Welcome Tiffany Cook, Family Resource Manager

CureDuchenne is proud to announce and welcome Tiffany Cook as its new Family Resource Manager. She, along with the CureDuchenne team, will be enhancing and presenting family education materials and investigating new ways to help families work with schools, insurance companies, clinicians, and other means of improving the lives of those families living with Duchenne. […]

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28 Jun
  • By Alicia Clough
  • Cause in

Access to Exondys 51 in Texas

If you live in Texas, are amendable to exon skipping 51, and you are having difficulty accessing Exondys 51, you or your provider may file a complaint to HPM_Complaints@hhsc.state.tx.us.  Exondys 51 is covered by STAR Kids, Texas’s Medicaid managed care program.   Type of information needed: Patient identification number Reference identification number Health plan Provider […]

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27 Jun
  • By Alicia Clough
  • Cause in

Collaboration to Fund CRISPR/Cas9 for Duchenne

Duchenne organizations are invited to fund CRISPR/Cas9 research at Exonics Therapeutics in a venture philanthropy collaboration. We are making progress on treatments for Duchenne, but a cure is the goal our hearts long for. With the innovative CRISPR/Cas9 research being conducted by Dr. Eric Olson at the University of Texas Southwestern Medical Center, there is […]

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16 Jun
  • By Alicia Clough
  • Cause in

Determination and Duchenne – Inspiration from my son on Father’s Day

Each year on Father’s Day, I like to take a moment and reflect on the memories I have with my family, specifically with my son Hawken. Being a father to Hawken has been, and always will be, the most meaningful role in my life. He has made me a proud father. His determination, kindness, and […]

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15 Jun
  • By Alicia Clough
  • Cause in

Dear Dad – A Father’s Day Message from Sons to Dads

Father’s Day is the perfect time to reflect on all that our fathers do for us. For boys with Duchenne, it’s a day that they get to cherish their fathers a little more for their exemplary strength and courage as they battle side by side with their sons against this incurable disease. The boys put […]

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13 Jun
  • By Alicia Clough
  • Cause in

Beyond the Lab – CureDuchenne Ventures Helps Accelerate Academic Research into Promising Medical Care for Patients

Academia has long been an incubating source of incredible medical breakthroughs. Sometimes it takes a little push and risk-taking to take that progressive research out of the lab and into a business environment to achieve life-changing treatments for patients. Such is the case for a promising new technology that has the potential to help 80% […]

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09 Jun
  • By Alicia Clough
  • Cause in

Meet Alex Chiabai – First Boy in Canada to Begin Drisapersen Redosing

Five years ago, 12-year-old Alex Chiabai was one of the first boy in Canada to begin taking drisapersen, a promising drug that provided a glimmer of hope for Alex and his family. After stopping and starting the drug several times over the past few years, Alex once again has the distinction of being the first […]

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06 Jun
  • By Alicia Clough
  • Cause in

PTC /Ataluren – FDA AdCom Meeting September 28, 2017

CureDuchenne is pleased to see that the FDA will hold an Advisory Committee Meeting (AdCom) for PTC Therapeutics’s drug Ataluren.  We are hopeful for a full and fair review which will prioritize the patient and physician voice and experience. Rare diseases are complicated and regulators need to hear about the real world benefit that patients […]

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