CureDuchenne

09/16/2025

🌟 Ribbon Cutting Ceremony: A New Era of Care for Duchenne 🌟

We’re honored to announce the dedication of the CureDuchenne Clinic within the Neuromuscular Program at Rady Children’s Health Orange County!

This partnership sets a new standard of care for Duchenne and other neuromuscular diseases in Southern California.

Led by Dr. John Crawford & Dr. Julian Thomas, the clinic will provide:
-- Comprehensive multidisciplinary care (neurology, cardiology, pulmonology, PT/OT, nutrition & more)
-- Next-generation diagnostics for earlier, more precise monitoring
-- Delivery of advanced treatments via a new Outpatient Infusion Center
-- Expanded opportunities to participate in clinical trials & research
-- A national model for adult transition care in partnership with UCI
-- A commitment to equity, serving historically underserved communities

CureDuchenne has committed $1.5M over three years to support key staff, diagnostics, and research that will change the trajectory of Duchenne across a lifetime.

🤝 In partnership with and chocchildrens, we’re building brighter futures for families impacted by Duchenne.

09/14/2025

Huge thanks to Dani and Troy Terry for hosting an unforgettable CureDuchenne Golf Shootout! 🏌️‍♂️⛳️

Their generosity, time, and unwavering dedication made this event truly special. From welcoming every guest with warmth to championing the cause with heart, they were nothing short of incredible hosts. 💙

Thanks to their support and the amazing community that came together, we took another strong swing at finding a cure for Duchenne muscular dystrophy.

Grateful beyond words — thank you, Dani and Troy!

09/13/2025

We had an incredible day at the Philadelphia Workshop. You all make these events so special. We love our community. Thank you to our sponsors who make these possible. 💙

09/13/2025

Everyone is playing for someone special. Who is your special person?

09/10/2025

WEBINAR: Avidity EXPLORE44-OLE Functional Data Update

Thursday, September 18, 2025
2 PM Pacific | 5 PM Eastern

Regsiter: https://us02web.zoom.us/webinar/register/WN_Fv8yJJWpSba8d14TOj3USg #/registration

09/10/2025

REGISTER HERE:
https://cvent.me/MMKYYo

📣¡ATENCIÓN COMUNIDAD DUCHENNE EN MÉXICO!

¡Llega a México la Conferencia CureDuchenne FUERZA: UNIDOS PARA CUIDAR, CONECTAR Y AVANZAR!

Este evento que reúne a familias, médicos especialistas y organizaciones de apoyo para un día completo de educación, recursos y comunidad se llevará a cabo el SÁBADO, 25 de OCTUBRE en CIUDAD DE MÉXICO (hotel Barceló México Reforma).

⏰Horario:
LLEGADA Y REGISTRO: 8:00am-9:00am | CONFERENCIA: 9:00am-4:30pm

Será un espacio COMPLETAMENTE EN ESPAÑOL para aprender, conectar y avanzar juntos en la atención de la distrofia muscular de Duchenne.
Y miembros del equipo The Akari Foundation estaremos presentes apoyando e informando sobre sus recursos para la comunidad hispana.💙

🔗 Regístrate aquí (presencial o virtual): https://cvent.me/MMKYYo
💻 Asistencia virtual en línea también disponible al momento de registrarse.

No te pierdas este día de esperanza, conocimiento y comunidad.🤝

*Si necesitas ayuda de traslado, solicítala al momento de tu registro.
Aplica solo para viajes de menos a 50 km de la conferencia

09/10/2025

As an early investor in Avidity Biosciences, we are pleased to share their exciting news that skipping exon 44 in the dystrophin gene with Del-zota was associated with functional improvements in multiple measures after one year of treatment.

Where can I learn more?
CureDuchenne will be hosting a webinar with Avidity on Thursday, September 18, 2025, at 5 pm ET, 2 pm PT. You can register to join the webinar: https://us02web.zoom.us/webinar/register/WN_Fv8yJJWpSba8d14TOj3USg #/registration


Read the press release and letter to the community https://cureduchenne.org/research/avidity-reports-multiple-functional-improvements-with-del-zota-for-individuals-with-duchenne-amenable-to-skipping-exon-44/

09/09/2025

09/08/2025

CureDuchenne, a global nonprofit based in Newport Beach that is dedicated to funding and finding a cure for Duchenne muscular dystrophy, has announced its second annual Ladies Luncheon Newport Beach at Shady Canyon Golf Club. More on this at newportbeachindy.com/fashion-with-impact-cureduchennes-ladies-luncheon-newport-beach-returns-with-max-mara-showcase.

09/07/2025

I natt kan norsk filmhistorie skrives. For aldri før har en norsk filmproduksjon vunnet en Primetime Emmy Award.