Donate Tissue Samples
If you or your loved one with a confirmed form of congenital nemaline myopathy will be having surgery, or wishes to donate tissue samples at the time of death, please contact Stacy.Cossette@childrens.harvard.edu or BeggsLabGC@childrens.harvard.edu as soon as possible about the option to collect one or more samples for NM research use.
The Beggs Lab at Boston Children’s Hospital, is a myopathy research program and biobank that serves as a place to safely store samples donated through medical procedures, such as surgeries, fetal sampling, and autopsies, to be used for medical research. The program staff can also arrange to receive your/your child’s left-over tissue from a previous muscle biopsy.
As part of the program, genetic testing may be offered to participants who haven’t yet received a confirmed genetic diagnosis for their NM. This will help researchers understand the genetic landscape of NM.
There is no cost to participate, and travel to Boston is not required. All enrollment is completed remotely.