Making treatment possible.
Giving Strength is a 501(c)(3) nonprofit funding research toward treatments for SELENON-related myopathy (SELENON-RM), a rare genetic muscle disease.
raised since 2020 to fund SELENON-RM research
active research projects
scientists and clinicians we partner with
partner research institutions
countries where our research partners work
Just because SELENON‑RM is rare doesn’t mean treatment should be impossible.
Finn was diagnosed in 2020 with the very rare genetic disorder SELENON Related Myopathy. Because of its rarity, conditions like SELENON-RM receive little to no support from large pharmaceutical companies. That reality is what drives Giving Strength. We are committed to supporting the dedicated research teams already working on SELENON-RM, while tirelessly building new partnerships with institutions and companies across the United States and around the world.
Treatment is possible but only with independent fundraising and donations to these research teams.
What is SELENON‑RM?
SELENON (formerly SEPN1)-Related Myopathy (SELENON-RM) is a group of rare progressive congenital disorders that impair the body’s ability to synthesize Selenoprotein N1. In order for a child to inherit SELENON-RM, both parents must carry a mutated copy of the gene encoding SELENON.
Infants born with SELENON-RM often present with hypotonia (reduced muscle tone leading to ‘floppiness’) and delayed gross motor milestones, such as rolling over or crawling. Muscle weakness is typically most pronounced in the neck and trunk, which can make simple tasks—like raising the head, sitting, standing, or transitioning between positions—difficult or impossible without assistance.
Four goals, one path toward treatment
Every project we fund is designed to move SELENON-RM research toward safe, effective therapies.
Why we fund research
“I am an example of what can be done with determination.”Jeff, who lived with SELENON-RM
“I believe that I am proof things can be better, it just takes being seen, listened to and fought for.”Nora, living with SELENON-RM
“Everyone deserves to be heard, believed, and treated with care.”Stephanie, living with SELENON-RM
Living with SELENON‑RM?
Connect with other families and help drive research from home.
Working with world-class scientists and clinicians
- Boston Children's Hospital & Harvard Medical School
Boston, MA - The Mario Negri Institute for Pharmacological Research
Milan, Italy - Institute of Myology — Sorbonne University / APHP / Inserm
Paris, France - University College Cork
Cork, Ireland - University of Alabama at Birmingham & Georgia State University
Birmingham, AL & Atlanta, GA - University of Minnesota
Minneapolis, MN - Radboud University Medical Center
Nijmegen, Netherlands
Treatment is possible, with your help.
Large pharmaceutical companies rarely fund ultra-rare diseases. Independent donations go directly to the research teams working on SELENON-RM.