Cure SCG

10/08/2025

Hope is stronger when shared 💚
Together, we can turn urgency into treatment and bring a cure closer for Sara and kids like her.
Support research today: www.CureSCG.org

09/30/2025

September 30 is Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day, a day to raise our voices, share stories, and stand together for research, care, and hope for the LGMD community.

09/22/2025

Dear Muscular Dystrophy Community,

We are delighted to announce a new partnership between the Center for Inherited Myology Research (VCU) and Burjeel Medical City, Abu Dhabi, bringing global muscular dystrophy expertise to the MENA region.

From October 20–24, 2025, Dr. Nicholas Johnson, MD, MSCI, FAAN, a leading neurologist in muscular dystrophies, will be available for consultations at Burjeel Medical City.

Dr. Johnson not only leads international research networks that set global standards of care, but he is also advancing gene therapy for two forms of Limb-Girdle Muscular Dystrophy (LGMD), types 2C and 2D. This makes his visit a unique opportunity for patients and families seeking both expert care and insights into the future of treatment.

Who may benefit from a consultation?

Patients with a confirmed diagnosis of muscular dystrophy seeking an expert review or updated care plan

Individuals with unexplained muscle weakness or a family history of neuromuscular disease

Families interested in genetic counseling or future planning for inherited muscle diseases

Location: Burjeel Medical City, Abu Dhabi
Dates: October 20–24, 2025 (limited availability)
Consultation Fee: AED 1,500 (approximately USD $408)

For booking, please contact:
Mr. Sherif Radwan
Mobile: +971 50 974 5903
Email: sherif.radwan@burjeelmedicalcity.com

09/09/2025

09/02/2025

CureSGC is deeply heartbroken by the loss of Donavon Decker, a true warrior and pioneer for the LGMD community. Donavon was one of the most genuine and supportive individuals our community has ever known. He offered guidance generously, and his kindness and care left a lasting impact on everyone who had the privilege to know him.

In 1999, Donavon became the first person in the world to receive gene therapy for muscular dystrophy. His courage in taking that groundbreaking step opened doors that have shaped awareness, advocacy, and hope for the entire community. His legacy is not only found in science but also in the lives of families who continue to draw inspiration from his resilience and determination.
Until his last day, Donavon worked with passion to advance research in non-viral gene therapy, holding a strong belief that innovation must continue until treatments reach patients. His unwavering determination has left a permanent mark on the fight against muscular dystrophy. Every patient who has received gene therapy today owes part of that progress to his bravery and vision.

Donavon’s life will always remind us why this fight continues—for patients, for their right to treatments, and for a brighter future. To his wife Kirsten, his family, and loved ones, CureSGC extends our deepest condolences, love, and prayers. His impact will live on in the urgent pursuit of treatments and in the countless lives he touched with his kindness, courage, and spirit.

08/25/2025

As CureSCG, we stand with our global LGMD community in this difficult moment. The decision to halt most LGMD gene therapy programs has been devastating for families who have given so much of their time, trust, and hope to these efforts.
This press release powerfully captures what so many of us are feeling: heartbreak, disappointment, and determination. While programs may be paused, our community’s commitment cannot be. We must ensure that the sacrifices of patients and families are honored, that vital data is not lost, and that drug developers, regulators, and advocacy groups work together to keep momentum alive.
Time is muscle. For patients, delays mean the irreversible loss of abilities most of us take for granted. We join the Speak Foundation and our partner organizations in calling for collaboration, transparency, and urgency to bring life-saving treatments to those who need them.
The dream of effective treatments for LGMD must continue, and we will not stop until it becomes reality. 💚

08/18/2025

Our brave Sara, living with Limb Girdle Muscular Dystrophy (LGMD), is using her art to help fund life-changing research. By supporting her paintings, you’re not just purchasing art, you’re fueling hope and standing with every child fighting LGMD. But time is muscle. Every day that passes, children with LGMD lose abilities most of us take for granted, climbing stairs, lifting their arms, walking, and even the ability to breathe. That’s why your support is needed now more than ever. Together, we can turn Sara’s art into action and transform hope into urgently needed cures 💚

🔗Shop https://curescg.org/shop
🔗Donate https://www.curescg.org/donate

07/19/2025

Behind every clinical trial are heroes. Today, we remember one. 💚

07/17/2025

Disheartening update for the LGMD community.
Sarepta Therapeutics has announced a pause on most of its gene therapy programs for LGMD as part of a strategic shift.

Read the full announcement: bit.ly/3GQo9aM

07/07/2025

Be part of the global conversation on LGMD – Register today at www.InternationalLGMDConference.com

06/09/2025

Congratulations to Atamyo Therapeutics on dosing the first patients in their groundbreaking gene therapy trial for LGMD2C/R5! A major step forward in advancing treatment for the LGMD community.

05/04/2025