We Are All In This Together.

Ana Ferreiro, MD, Ph.D., the University of Paris and the Pitié-Salpêtrière Hospital, Paris. Dr. Ferreiro, a practicing physician and researcher, is an internationally recognized expert in early-onset myopathies whose previous work contributed to the recognition of SELENON mutations as a causal factor in SELENON-CM. Dr. Ferreiro’s investigations have characterized SELENON-CM at both the molecular and clinical levels and have played a crucial role in advancing clinical readiness. Current programs focus on identifying biomarkers and conducting high-throughput screening in patient-derived cells to discover repurposed drugs that target the energetic deficits and cellular stress linked to SELENON-CM.

Alan Beggs, Ph.D., Boston Children’s Hospital and Harvard Medical School, Boston. Dr. Beggs is at the forefront of research into the genetics of rare myopathies and has extensive experience in the development of innovative disease models. His laboratory has created crucial mouse and zebrafish models of SELENON-CM and is utilizing these tools to unravel SELENON-CM disease mechanisms and drive drug discovery. A key member of Dr. Beggs’s team, Behzad Moghadaszadeh, Ph.D., was the first to identify SELENON mutations as the underlying cause of SELENON-CM. Dr. Moghadaszadeh has made significant technical advances in the development of a gene therapy to restore functional SELENON protein in affected patients. The latest version of this therapeutic vector is currently undergoing extensive testing and further refinement before entering formal preclinical trials.

Ester Zito, Ph.D., The Mario Negri Institute for Pharmacological Research, Milan. Dr. Zito is a leading expert in endoplasmic reticulum (ER) stress pathways, which are dysregulated in diverse diseases, including SELENON-CM. Her laboratory is investigating the inhibition of an ER stress-related protein called ERO1A as a therapeutic strategy for SELENON-RM. Dr. Zito's pioneering work has utilized cellular models, mouse models, and patient biopsies to elucidate the role of ERO1A in the bioenergetic deficits, cellular stress responses and muscle cell dysfunction associated with SELENON mutations. Her research points to ERO1A as a possible biomarker for SELENON-RM and potential target for both novel therapeutics and drug repurposing efforts.

Karen earned her bachelor’s degree in biology from Smith College and a Ph.D. in physiology from Penn State University. She joined Giving Strength in 2024, bringing over 20 years of experience in the life sciences industry, with a focus on drug discovery and early to mid-stage clinical development. She is continually inspired by the resilience and resourcefulness of the patient community and honored to work alongside our outstanding scientific and clinical collaborators. 

Lindsey and Ronnie’s son was diagnosed with SELENON in 2020. This news drove them into action to start Giving Strength Inc. Hosting their first charity golf tournament in 2020, Swings for Finn with the help of their amazing family and friends. Lindsey and Ronnie are so grateful for all of the love, support and generosity shown. “Thanks to you, we are able to keep hope alive”. - Lindsey & Ronnie

Madeline Hollander and Sam Parker are the parents of Max, now 3 years old, and co-founded Giving Strength Foundation alongside Lindsey & Ronnie Curly. Sam runs a contemporary art gallery in Los Angeles, which hosted the benefit exhibition "Wishing Well" in 2023, and Madeline is an artist and choreographer who exhibits internationally.