CureDuchenne

03/29/2026

We’re still holding onto the feeling from our Baltimore workshop—what a truly special and meaningful day 💙

Hearing Jake Marrazzo share his Duchenne and life journey was incredibly moving and set the tone for a day rooted in honesty, strength, and connection. We’re so grateful to Dr. Andreas Barth from Johns Hopkins for thoughtfully walking us through cardiac considerations, and to Dr. Doris Leung from Kennedy Krieger for helping families better understand acute care management. Ann McCormick brought invaluable insight into physical therapy, while Numotion made it real by bringing equipment and hands-on support. And thank you to Lianna Orlando for guiding everyone through the Duchenne treatment landscape with clarity and care.

Most of all, we are deeply thankful to the families who chose to spend their Saturday with us—your openness, resilience, and willingness to connect are what make this community so powerful.

And to our sponsors, thank you for helping make a day like this possible.

We left Baltimore feeling inspired, connected, and reminded of why this work matters so much! 💙

03/27/2026

Thank you to Davia Jones for sharing your family's story with Mindy Basara WBAL and WBAL-TV 11 Baltimore!

Through CureDuchenne, Davia and Kyrie found a community that understands this journey and reminds families they are not alone.

Join Davia and our CureDuchenne Cares team at our workshop in Baltimore tomorrow as we bring the community together and continue driving progress forward for families.

Watch now: https://www.wbaltv.com/article/health-nonprofit-aids-son-duchenne-muscular-dystrophy/70869992

03/26/2026

To everyone who bid, raised their paddle, and showed up for the Duchenne community at Napa in Newport — thank you. And to the families who shared their stories: your courage is the reason we do this. 💙

03/26/2026

FUTURES 2026 | May 21-24 | Orlando, Florida

If you've been waiting to register, now is the moment. Early bird pricing for Family/Caregiver attendees ends this Friday, March 27.

For four days in Orlando, families, caregivers, researchers, and clinicians come together to share the latest in care, science, and support for living with Duchenne.

Register today using the link below 💙

https://web.cvent.com/event/ee9e7402-2c59-420f-9cf9-5731cf20d4d9/summary

03/26/2026

When you joined us at Napa in Newport, you became part of something much bigger than one evening ✨️

We wanted you to hear directly from the families whose future depends on the progress you help make possible 🍷

Because of supporters like you, research is moving forward and more families have reason to hope 💙

03/26/2026

03/25/2026

Shoutout to Yuva Gambhir on being named Youth Citizen of the Year! 💙

Diagnosed with Duchenne at three years old, Yuva has turned his journey into impact—raising over $3 million, mentoring others, and using his voice to inspire families across the community. (The Philadelphia Citizen)

We’re proud to have Yuva as part of the CureDuchenne family and grateful for the light he brings to so many.

Read more about his incredible story 👇
https://thephiladelphiacitizen.org/citizen-of-the-year-awards-youth-citizen-yuvaraj-r-gambhir/

03/25/2026

At OPT Congress, CureDuchenne founder and CEO Debra Miller shared how her son Hawken’s Duchenne diagnosis became a mission to accelerate treatments for the entire community. She outlined CureDuchenne’s venture philanthropy approach to identifying and advancing promising therapies, including investments in exon skipping, gene editing, and other platforms, with proceeds reinvested to support future research. Miller also underscored the importance of patient care, education, and family support. Her message was one of hard-earned hope: real progress is reaching patients, momentum is building, and the rare-disease community must keep moving forward together.

03/24/2026

FUTURES 2026 | May 21-24 | Orlando, Florida

FUTURES 2026 has something for everyone! 💙

We’re bringing back some favorites and introducing exciting new experiences—but one thing that never changes is our fan-favorite eGaming section 🎮

It’s more than just fun—it gives kids and teens a space to connect and enjoy themselves, while parents and caregivers can fully engage in sessions with peace of mind.

Because at FUTURES, we’re thinking about the whole family. ✨

Register using the link below 💙
https://web.cvent.com/event/ee9e7402-2c59-420f-9cf9-5731cf20d4d9/summary

03/22/2026

Last night in Austin was truly special 💙

We were honored to gather with such an incredible community for our CureDuchenne dinner—an evening filled with connection, purpose, and a shared commitment to ending Duchenne.

A special and heartfelt thank you to our generous sponsors—your partnership and support make evenings like this possible and help move our mission forward in meaningful ways. We are deeply grateful for your commitment to this community.

Thank you to everyone who joined us and continues to stand with Duchenne families. Together, we are stronger. Together, we are changing the future.

03/22/2026

Thank you to everyone who made an incredible weekend of purpose. Every dollar raised brings us closer to a cure for Duchenne muscular dystrophy. 💙