Duchenne Care Archives - CureDuchenne

01 Aug

By Nic Williams
Cause in

Dedicated Online Platform DuchenneXchange.org Launches to Unite, Support and Educate Duchenne Community

Dedicated Online Platform DuchenneXchange.org Launches to Unite, Support and Educate Duchenne Community Collaborative site offers a trustworthy, moderated online space where Duchenne families, caregivers, NGOs and pharmaceutical companies can connect and share knowledge NORWALK, CT (July 31, 2018) — The Duchenne muscular dystrophy (DMD) community now has a dedicated online platform where they can connect […]

27 Jun

By Nic Williams
Cause in

Day Two Report from the 2018 New Direction in Biology and Disease of Skeletal Muscle Conference

The second day of the conference focused on gene editing, gene therapy as well as the latest research into the development of disease biomarkers. Presentations included: Dongsheng Duan (University of Missouri) described his research groups efforts that led to the selection of an optimized micro dystrophin gene construct for systemic AAV deliver to Duchenne patients. […]

26 Jun

By Nic Williams
Cause in

CureDuchenne’s Chief Scientific Advisor, Michael Kelly, Reports From Day One of 2018 New Direction in Biology and Disease of Skeletal Muscle Conference

CureDuchenne staff is participating in the New Direction in Biology and Disease of Skeletal Muscle Conference in New Orleans this week. Our staff scientist, Michael Kelly, will be providing a summary of key learnings each day. Have a question? Leave us a comment and Michael will respond. Jane Owens (Rare Disease Research Unit, Pfizer) provided an […]

02 Oct

By Alicia Clough
Cause in

Every Bit Matters: Nutritional Suggestions for Duchenne Patients

Leading a healthy lifestyle is something that any individual should aim towards. For those with Duchenne, making nutritional modifications has the potential to improve their overall health. Research has indicated that proper nutrition is one component that can improve the overall quality of life for a person living with Duchenne. Seven Daily Points […]

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 […]

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. […]

28 Jun

By Alicia Clough
Cause in

Expanding Our Efforts: Sharing CureDuchenne Resources with Duchenne Families in Russia

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, […]

11 Apr

By Alicia Clough
Cause in

Physical Therapist Elina Gonzalez Lends Experience and Intuition to Duchenne Community

Physical Therapist Elina Gonzalez’s intuition has been a driving force in her career. During one of her early cases, a child presented signs of muscle weakness and underdevelopment, but remained undiagnosed. Elina took the time to carefully examine her patient and consult the child’s father with additional questions about the child’s symptoms. Elina’s gut feeling […]

20 Mar

By Alicia Clough
Cause in

Physical Therapist Karin Gorman is a Glimpse of Hope for Local Duchenne Community

After her 10-month-old nephew was diagnosed with Duchenne muscular dystrophy, Karin Gorman was inspired to learn more about the disease and find a way to make a difference in the lives of families and individuals affected by Duchenne. A fatal genetic disease with no cure, Duchenne muscular dystrophy causes muscle deterioration and affects more than […]

26 Jan

By cure.duchenne
Cause in

Physical Therapist Darcy Peach Provides Peace of Mind to Duchenne Families

Darcy Peach discovered her calling to become a physical therapist while undergoing treatment for a volleyball injury in high school. During her treatment sessions, Darcy’s physical therapist took a great deal of care and time in treating her. She witnessed first-hand the therapeutic and relationship building benefits that occur during the process of physical […]

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