CureDuchenne hosted a live Twitter chat on September 20 to raise awareness and address the important issues facing the Duchenne community. It was an opportunity to hear from patients, parents, caregivers and featured special guest Perry Shieh, MD, practicing clinician at the Center for Duchenne Muscular Dystrophy at UCLA, a certified Duchenne Care Center. Topics […]
CureDuchenne is hosting a Twitter chat #DuchenneChat on September 20 at 11 a.m. PDT/2 p.m. EDT to raise awareness and address the important issues facing the Duchenne community. This Twitter chat will be an opportunity to hear from patients, parents, caregivers and will feature our special guest Perry Shieh, MD, practicing clinician at the Center […]
Dr. Kevin Flanigan from Nationwide Children’s Hospital provided an update on his Dup2 research during a CureDuchenne hosted call with families on September 6. Back in 2010, Dr. Flanigan told me he was working on duplication mutations.  We knew so many families with these rare mutations, and at that time, the excitement seemed to be […]
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 […]
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. […]
Fourteen years ago, I travelled to Russia with my family, just months after our son Hawken had been diagnosed with Duchenne muscular dystrophy. It was very raw for us at that time, we had no idea what to do, CureDuchenne was the furthest thing from our minds.  We were trying to deal with the diagnosis, […]
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 […]
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 […]
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 […]
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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