Tissue & Organ Donation

The advancement of scientific discoveries towards treatments and a cure for Rett syndrome depends on the ability of researchers to study how mutations in the MECP2 gene affect growth and development. You can help researchers by donating your child’s blood or tissue from a routine blood draw or donating their organs to research upon death.

Tissue Donation

A sample of your child’s blood or tissue is an invaluable resource for researchers who study how MECP2 mutations affect growth and development. You can donate a blood or tissue sample from a routine blood draw or when your child undergoes a medical or surgical procedure (e.g., skin or muscle biopsy, endoscopy, scoliosis surgery). Coriell Institute for Medical Research catalogs these samples and makes them available to researchers worldwide.  Coriell will send you a collection kit with complete instructions for the physician, lab, hospital or medical center and prepaid FedEx materials. Visit coriell.org or call (856) 966-7377. 

Organ Donation

The passing of a loved one who has lived with Rett syndrome is heartbreaking. During this difficult time, you may find solace knowing that in death they can give the gift of hope for finding treatments and a cure to those still living with Rett syndrome.  

Organ donation is critical to the dedicated researchers working tirelessly to unravel the mysteries of Rett syndrome. We urge U.S. and Canadian families to please consider this selfless and courageous gift to the Rett syndrome research community.  

If you decide to proceed, it is critical that you contact the Harvard Brain Bank within 24 hours of passing, and before any preparations. Know that donation will not interfere with any funeral arrangements, including viewing. The kind and respectful staff at the Harvard Brain Bank will handle all arrangements directly with the hospital, hospice nurse, coroner, or pathologist. 

You are not alone.

IRSF’s Family Empowerment Director, Paige Nues, is available to answer any question you may have and support you during this process. You can reach her at (510) 499-3858 or email her at [email protected].