About the LGMD2D Foundation

Founders

Bryan and Caroline founded the LGMD2D Foundation in September 2013, after seeing limited research and lack of treatment options to help their son, who has been faced with this rare disease diagnosis. They knew they needed to begin fixing this gap in providing information and resources to those living with LGMD2D. Over 10 years later, the Barber family continues to lead the foundation, dedicated to making a difference in the lives of patients and families living with LGMD2D. Bryan is the foundation's President & CEO and Caroline oversees as 

Treasurer & Secretary.

Director, Fundraising & Patient Advocacy

Michelle is a mother, nurse, and passionate advocate, bringing with her a profound dedication to accelerating progress in the fight against LGMD2D. Inspired by her own child's diagnosis at the age of 10, Michelle’s journey began with a mission to raise awareness, advocate for treatments, and ultimately expedite the quest for a cure. Michelle’s commitment to awareness and advancing treatments or cures for LGMD2D embodies the heart and soul of our foundation to inspire hope and progress for all those affected by this rare and challenging disease. 

Director, Fundraising & Patient Advocacy

 Faran, a Central Michigan University alumna with a B.S., brings a wealth of experience in customer service and Human Resources. 

Motivated by her son Hudson's battle with LGMD2D, Faran is dedicated to raising awareness and advancing towards a cure. Her commitment extends to volunteering with the Speak Foundation, where she served on the planning committee to organize the 2023 International LGMD Conference. 

Faran's journey is fueled by a passion for making a meaningful impact in the pursuit of progress and support for those affected by LGMD. 

Executive Director & Board Member

Rachel has been a part of the LGMD2D Foundation since 2021, shortly after learning of her son's diagnosis of this rare disease.  Leveraging her years of professional experience in Marketing, she started as the foundation's Director of Marketing & Patient Advocacy and has since helped the foundation continue to grow, being named Executive Director in fall 2023. 

 Rachel is driven everyday by her son and by helping other patients and families living with LGMD2D. She is determined to help drive the foundation's mission to get LGMD2D patients the treatments they desperately need. She is deeply committed to the entire LGMD community and enjoys partnering with other LGMD advocacy foundations. 

 Rachel lives in Connecticut with her husband, Josh, and two young sons. In her spare time, she loves being with her family, gardening, exploring new places, making memories and watching her little ones grow! 

Executive Board Member 

Dr. Suji Vasu is in the field of Cardio Oncology at Atrium Health - Wake Forest Baptist. With the help of the Comprehensive Cancer Center, she has established the CardioOncology Program at the Cancer Center. A second area of expertise is in Advanced Imaging for structural heart disease that includes Cardiac CT and Cardiac MRI. Having expertise in multimodality imaging (Echo, 3D TEE, Cardiac MRI and Cardiac CT) has enabled her to be in the Imaging Core for the Structural heart disease program at Wake Forest Baptist Health.   

Dr. Vasu is taking her years of medical and cardiology experience to help the LGMD2D Foundation and sarcoglycanopathy community advance safe and effective treatment options 

for LGMD. 

Dr. Doug Albrecht earned his Ph.D. from the University of California, Los Angeles, where he studied muscle adaptation and remodeling. His postdoctoral research focused on the signaling aspects of the dystrophin cytoskeletal scaffold at the University of North Carolina at Chapel Hill and the University of Washington. 

Dr. Albrecht is Co-President of the Jain Foundation and a senior member of the Jain Foundation Scientific Advisory Board. In addition to these roles, Dr. Albrecht is also leading the Jaun Foundation's assay development and preclinical analysis efforts, which are being conducted in partnership with contract research organizations.

Chris Carroll is 40 years old and lives in East Norriton, PA, with his wife and two children. He was diagnosed with LGMD2D
Chris has chosen to use his diagnosis to spread awareness for LGMD and use his personal experience to motivate others to get involved in the fight and to continue the advancement of treatments and a cure for this disease. 

In his spare time, Chris enjoys playing with his children, Jordyn, 3, and Brogan 1 1/2 and going to different restaurants with his wife Joy.

Anne M. Connolly, MD, is chief of the Division of Neurology at Nationwide Children’s Hospital, professor of Pediatrics at The Ohio State University College of Medicine, and a member of the Center for Gene Therapy in the Abigail Wexner Research Institute. An expert in pediatric neuromuscular disease and neuroimmunology, Dr. Connolly’s early research examined the relationship between autoantibodies and childhood neurological disorders. She also studied the natural history and effects of treatment of mouse models of Duchenne muscular dystrophy (DMD) and congenital muscular dystrophy (CMD). 

Dr. Connolly has helped develop outcome measures for children with DMD and SMA and has led or been a collaborator in numerous pivotal clinical trials in children with neuromuscular disorders.

Dr. Nicholas Johnson is the Director of the Center for Inherited Myology Research (CIMR), professor, and vice chair of research in Neurology at Virginia Commonwealth University. He received his undergraduate degree in molecular and cellular biology and psychology at the University of Arizona. He then obtained his medical degree at the University of Arizona. He completed his neurology residency and combined fellowship in neuromuscular medicine and experimental therapeutics at the University of Rochester.

Dr. Johnson leads the GRASP-LGMD consortium, which focuses on developing clinical outcomes and biomarkers in the limb girdle muscular dystrophies and co-leads the Myotonic Dystrophy Clinical Research Network which focuses on developing clinical outcomes and biomarkers in the myotonic dystrophies. Both networks include sites across the United States, Europe, Canada, and New Zealand with multiple natural history protocols. His laboratory is focused on identifying the pathogenesis and progression of myotonic dystrophy, and biomarkers in limb girdle muscular dystrophy. Johnson conducts genetic therapeutic trials using both viral and non-viral approaches in many inherited nerve and muscle disorders, including limb girdle muscular dystrophy, myotonic dystrophy, and facioscapulohumeral muscular dystrophy. 

Dr. Linda Lowes, a physical therapist and researcher specializing in the assessment of neuromuscular dystrophies, is a principal investigator in the Center for Gene Therapy at Nationwide Children's and a research associate professor of Pediatrics at The Ohio State University. She directs the Lowes Neuromuscular Outcome Measures Lab, where she and her team develop new methods for measuring function and movement in people with neuromuscular diseases.

The Lowes Lab specializes in identifying outcome measures for rare diseases and neuromuscular disorders to better guide the development and assessment of new therapies in clinical trials. The team also develops innovative new measurement methods, including the ACTIVE Seated and the ACTIVE Mini. These systems are designed to assess movement in newborns using video game technology and are currently being tested for wide-scale use in partnership with Microsoft.

In 2019 the Lowes Lab was named the Outstanding Team of the Year at the Abigail Wexner Research Institute. Dr. Lowes has published more than

 50 articles.

Dr. Kemi Mascoll-Robertson is a board-certified Physician in General Pediatrics and Neonatal Perinatal Medicine at Brookdale University Hospital and Medical Center. Dr. Mascoll-Robertson obtained her medical degree from the University of the West Indies in Barbados in 2004. There she received the prestigious Dr. Ann and Harry Bayley Award for the Best Clinical Performance in the Final Medicine (OSCE) Examination. She completed pediatric residency at Flushing Hospital Medical Center in Flushing, NY in 2011, followed by the Neonatal Perinatal Medicine Fellowship at the Universoity of Maryland Medical Center in Baltimore, Maryland. 

Prior to joining Brookdale at One Brooklyn Health, Dr. Mascoll-Robertson fulfilled the prestigious roles as the Attending Neonatologist, Division Chief of Pediatrics at the Methodist Hospitals, Indiana. In addition, she was the Associated Regional Director of Optimus Hospitalist & Pediatric Sub specialist at Oakbrook, Illinois.  She has been the recipient of The Fellow Research Award and The Thomas Jefferson Honorarium and Speakership Award, for Research in Neonatology. 

Dr. Mascoll-Robertson is taking her years of medical and pediatrics experience to help the LGMD2D Foundation advance safe and effective treatment options for LGMD2D.