Cure SCG

11/27/2025

With gratitude to the LGMD community today and always. 🧡🍁

11/03/2025

Use your Donor-Advised Fund to support kids affected by LGMD 💚

Give at: https://www.curescg.org/donate

10/28/2025

10/25/2025

Sara, who lives with a rare condition called Limb-Girdle Muscular Dystrophy (LGMD), is a big fan of 💫

When Sara saw you sing, she loved you. 💖
But when she heard your story, she said, “She’s like me.”
That moment gave her strength, to believe in herself, to advocate for others with LGMD, and to use her art to raise awareness and hope for a cure. 🎨💚

Thank you, Emma, for giving Sara and so many others the courage to dream big and to keep fighting. You are truly an inspiration. 🌍🙏
We look forward to welcoming you again soon in Abu Dhabi. 🇦🇪✨

10/24/2025

10/15/2025

💚 At just 10, she paints to fund research for a cure for Limb-Girdle Muscular Dystrophy. Every brushstroke brings us closer to hope.

🖼️ Learn more or donate at www.CureSCG.org

🎨Shop at https://curescg.org/shop

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. 💚