At “Cure SCG”, our mission is clear: to provide a dynamic and inclusive space for the exchange of ideas, research findings, and advancements in the field of LGMD, particularly focusing on the Sarcoglycanopathy gene. By facilitating collaboration and knowledge-sharing, we strive to propel LGMD research forward and make significant strides towards a cure.
Co-founder
Devoted father and cybersecurity engineer by profession, founded CureSCG and found a deeper purpose to not only help his daughter but also to extend hope and support to all those affected by this life threatening disease. His mission is deeply personal, fueled by love and a steadfast commitment to give his daughter and the over 210,520 individuals affected by LGMD a chance at a brighter future.
Co-founder
A Quality Consultant by profession and a caring mother, Rana co-founded CureSCG with a heartfelt dedication to finding a cure for her daughter, Sara, who has been diagnosed with Limb-Girdle Muscular Dystrophy (LGMD). Fueled by love and determination, Rana tirelessly supports pioneering research and strives to offer hope to all families impacted by this life threatening disease.
Board Member - Fundraising & Patient Advocacy
Sheena Urdaz, PA-C is a Florida-licensed Physician Associate and CureSCG board member supporting fundraising and patient advocacy. She brings both clinical experience and caregiver perspective to help drive research progress and improve quality of life for individuals with LGMD
Strategic Advisor – Canada
A trilingual professional fluent in French, English, and Arabic, she brings over a decade of experience in strategic management, regulatory compliance, and stakeholder engagement. Her advocacy work was born in June 2025 when her son Samy was diagnosed with LGMD-2C at 20 months old. She now channels her expertise in policy, communication, and strategy into building Canada’s most active LGMD-2C advocacy effort — determined to ensure no family faces this fight alone.
Patient Advocacy Advisor – Canada
Operations and management professional based in Nepean, Ontario, with over a decade of leadership experience across the public and private sectors in Canada and internationally. His advocacy work began in June 2025 when his son Samy was diagnosed with LGMD-2C at 20 months old — believed to be one of the rarest cases of this subtype in Canada. Since then, Azeddine has built a cross-border advocacy and fundraising effort driven by one conviction: that for children like Samy, time is muscle.
Professor, College of Medicine, University of Sharjah, UAE Founder & President, MENA Organization for Rare Diseases, Dubai, UAE Consultant Clinical Genetics at Kanad (Oasis) Hospital (Al Ain), Genesis Healthcare Center (Dubai), University Hospital (Sharjah), and Burjeel Medical City (Abu Dhabi)
MD, MSCI, FAAN Professor and Vice Chair of Research , Director of Center for Inherited Muscle Research (CIMR), George Bliley Research Chair, Virginia Commonwealth University
MBBS, DPB, PGDHHM, CABP(H), DABRM, FABRM. Global expert with 22+ years of leadership in biotherapies, regenerative medicine, cord blood banking, apheresis, transfusion medicine, medical devices, and transplantation. Specialist in project execution and facility operations across clinical and laboratory settings.
Vice President of Toxicology and Pathology at Attentive Science Ltd. He is a double-board-certified veterinary pathologist and toxicologist and Fellow of the International Academy of Toxicologic Pathologists. A recognized leader in cell and gene therapy development, he has guided multiple programs from nonclinical stages to successful IND and CTA submissions into clinical trials at large biopharmaceutical companies. At Sanofi, he led nonclinical safety for the entire gene therapy portfolio. His prior roles include positions at the US FDA, Vaccine and Gene Therapy Institute at OHSU, and Pfizer. Dr. Assaf has authored key publications on gene therapy development, including a chapter on gene therapy and gene editing in Haschek and Rousseaux's Handbook of Toxicologic Pathology. He regularly presents at international conferences and advises regulatory agencies and industry peers on cell and gene therapy. He holds a veterinary degree, a PhD in Comparative Pathology from UC Davis, and completed postdoctoral and residency training at Harvard Medical School’s New England Primate Research Center.
