A Lasting Legacy
It began with a telephone call from a very special individual – Matthew Thies, a gentleman living with Smith-Lemli-Opitz syndrome in Omaha, Nebraska. Matthew was requesting our help to fulfill his lifelong desire to give a tissue donation after his death.
The Smith-Lemli-Opitz Foundation partners with the University of Maryland Brain and Tissue Bank in Baltimore, Maryland, to make end-of-life organ and tissue donations possible. Anyone, regardless of age, can give this type of donation, but advance preparations are needed to ensure its success.
The University of Maryland’s medical school staff works closely with our families to gather the necessary information and prepare all consent forms. The university also covers all non-funeral-related costs to participate in the donation program.
SLOS tissue donations are vital to scientists and researchers working tirelessly to unravel the mysteries of Smith-Lemli-Opitz syndrome. We urge U.S. and Canadian families to please consider this type of selfless and courageous gift to the SLO syndrome rare disease research community.
If you, or your loved one, has Smith-Lemli-Opitz syndrome and you are considering advance planning for a tissue donation, we welcome your phone call and will guide you through the process. The University of Maryland Brain and Tissue Bank is available 24 hours a day for questions by calling (800) 847-1539.
To learn more, visit our Legacy Donation page.
Words from our
at my time and donating my tissues
would help science and research come up with cures for this disease that I have
because there is no cure for this right now.
But I hope in the near future somebody
might come up with a cure for this
and that’s why I want to help."