CureDuchenne Launches Virtual Mobility Medical Equipment Expo for DMD Patients, Families

by Margarida Azevedo, MSc | October 30, 2017

The nonprofit CureDuchenne launched a new resource for the Duchenne muscular dystrophy (DMD) community called the CureDuchenne Cares Virtual Durable Medical Equipment (DME) Expo.

CureDuchenne was founded in 2003 to help save the lives of those with DMD. Through CureDuchenne Cares, the organization has brought innovative physical therapy and standard-of-care approaches to communities around the country.

With the CureDuchenne Cares Virtual DME Expo, families living with Duchenne will be able to experience a durable medical equipment exhibition from their own living rooms.

The DME Expo is a new interactive online resource designed to enable caregivers and family members to access information about equipment that could help keep their loved ones mobile and active. The website offers “exhibit halls” with information about orthoses (an externally applied device designed and fitted to the body to increase mobility or reduce pain), home equipment, as well as mobility and respiratory devices.

The DME Expo also offers a resource center and a “lounge” chat room to help parents and family members navigate the challenges that surface when dealing with different devices and equipment at various stages of the disease.

The ultimate goal of the CureDuchenne Cares Virtual DME Expo is to foster hope and empower DMD families.

“At CureDuchenne we strive to create and share valuable resources for families to help them navigate the journey of Duchenne,” Tiffany Cook, CureDuchenne family resource manager, said in a press release.

“The Virtual DME Expo is a new tool for families that provides information in a user-friendly environment to support their loved ones.”

You can register here for the CureDuchenne Cares Virtual DME Expo.

The DME Expo was developed with the help of funds from a 2016 STRIVE Award, provided by PTC Therapeutics.

The STRIVE for DMD program recognizes the critical role patient advocacy groups play in improving the lives of Duchenne patients and caretakers. Grants are awarded to projects that aim to facilitate unique, inventive ideas or programs that support patients and families in the DMD community.

PTC Therapeutics is the company behind Duchenne therapies like Translarna (ataluren) and Emflaza (deflazacort).

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About the Author

Margarida Azevedo, MSc Margarida graduated with a BS in Health Sciences from the University of Lisbon and a MSc in Biotechnology from Instituto Superior Técnico (IST-UL). She worked as a molecular biologist research associate at a Cambridge UK-based biotech company that discovers and develops therapeutic, fully human monoclonal antibodies.