Curelgmd2i Foundation

05/28/2026

Do you have any top tip ideas to share? We would love your input!

Do you have a tip or trick to make living with LGMD a little easier?

We want to hear from you as we work on creating a TOP TIPS resource for people living with LGMD.

💚To submit your favorite TOP TIPS, go to https://forms.cloud.microsoft/e/ZvesybgA8k

05/28/2026

Our VP, Dan Pope, is at the University of Florida Regenerative Medicine Symposium today representing CureLGMD2i Foundation.
Stop by and say hello!

05/27/2026

We are ecstatic to see that the FDA has accepted the NDA with priority review for Bridge Bio's BBP-418 - potentially the first approved therapeutic for patients living with LGMD2I/R9!

Important information for members of our patient community:

1. Get registered and/or update your information in the Global FKRP Registry (https://www.fkrp-registry.org/en)
2. If you are already enrolled in the clinical trial for BBP-418, please continue attending your scheduled trial appointments. Consistent participation helps demonstrate strong commitment from the patient community to the FDA and supports the ongoing evaluation of this important therapy
3. If you suspect you have LGMD2I/R9 and have not yet been genetically confirmed, visit www.curelgmd2i.org to obtain FREE genetic testing!

The date is locked in for LGMD2I/R9.

The FDA has accepted our NDA for BBP-418 for LGMD2I/R9 and set a PDUFA target action date of November 27, 2026, the date by which the FDA will complete its review.

LGMD2I/R9 is a progressive, life-shortening disease with no approved treatments. If BBP-418 is approved, it would be the first for LGMD2I/R9, and potentially for any form of .

For a community that has lived with no approved treatment options, timing is everything. We're racing toward potential approval and preparing for launch so that those with LGMD2I/R9 can be reached as quickly and safely as possible.

05/26/2026

CureLGMD2i Foundation was honored to organize and host the 2nd European LGMD2I/R9 Patient & Family Conference at the beautiful Musholm Sport & Conference Center in Korsør, Denmark 🇩🇰

Together, patients, families, clinicians, researchers, and advocates from more than 20 countries gathered for several days of learning, collaboration, and connection. The conference featured presentations from leading LGMD experts covering standards of care, clinical trial updates, physiotherapy, research advancements, and more.

Equally important were the opportunities for smaller group discussions where attendees shared experiences, practical strategies, and encouragement for living their best lives.

Seeing so many meaningful connections formed across the global LGMD 2I/R9 community was truly inspiring.

We are deeply grateful to all of the speakers, attendees, volunteers, and supporters who helped make this conference such a success.

💚 Together we are building hope, community, and progress for everyone affected by LGMD2I/R9.

📷: Gorm Branderup

05/25/2026

This past weekend, during the 2nd European LGMD2I/R9 Conference in Denmark, we were honored to recognize two extraordinary leaders whose work has made a lasting impact on the /R9 community.

Professor John Vissing was presented with the Clinical Research Award in recognition of his dedication to advancing clinical research and improving care for individuals living with LGMD2I/R9.

Professor Volker Straub received the Lifetime Achievement Award for his outstanding leadership, commitment, and decades of contributions to the LGMD2I/R9 patient community, including the development of the Global FKRP Registry.

The awards were presented by our Co-Founder & CEO, Kelly Brazzo, alongside Dr. Katherine Mathews and Christina Volf. Dr. Mathews was the recipient of the inaugural award, presented at the First European LGMD2I/R9 Conference in Amsterdam, and Christina Volf was the first patient in the world to receive gene therapy for LGMD2I/R9.

We are deeply grateful for the heroic and extraordinary contributions of these individuals, which continues to drive progress toward future treatments and hope for the entire patient community.

05/21/2026

We are so grateful to our “Champion of Strength” sponsor, , for supporting this year’s European conference and standing alongside the community.

Because of partners like you, we can continue building awareness, strengthening connections, and supporting meaningful progress toward treatments. Thank you for making an impact and helping bring our community together. ✨

We can’t wait to see you this weekend!

05/20/2026

Thank you to our “Force for a Cure” sponsor, , for your support and commitment to our community. You are helping create opportunities for connection, advocacy, and hope for families around the world.

05/19/2026

We’re proud to recognize our “Foundation of Hope” sponsors, The SPEAK Foundation and MyTomorrows, for helping make our upcoming conference possible.

Your support reflects the power of community and the importance of coming together in support of families affected by LGMD2i. Thank you for believing in our mission and helping strengthen our global community.