It is a tragedy every time the SLOS community loses one of its own to premature death. In some cases, families like to take the opportunity to contribute to the greater good at such a time of sadness and loss.
One way in which families can contribute to science is by tissue donation.
The University of Maryland’s Brain and Tissue Bank assists families in collection of tissue for research purposes at the time of death of a loved one.
Researchers need access to precious tissue from individuals with SLOS in order to make significant discoveries that can lead to a better understanding of the condition resulting in improved diagnosis, treatment, and, ultimately, a cure.
In order for scientists to carry out certain critically important studies of Smith-Lemli-Opitz syndrome, they must have access to tissue such as brain, heart, and lung tissue from individuals who have died.
While we SLOS researchers hold in our hearts any parent facing such a difficult decision, we also appreciate how such a decision can allow us to help other families living with SLOS.
Robert D. Steiner, MD
Editor in Chief: Genetics in Medicine
Clinical Professor · University of Wisconsin
Medical Geneticist · Marshfield Medical Center
The SLO Foundation recently made an important and significant advancement in our ability to collect SLOS tissue for medical research.
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.
If you, or your loved one, has Smith-Lemli-Opitz syndrome and you are considering advanced 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.
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.
One final note.
We wish to acknowledge that Matthew’s amazing gift to SLOS research in 2021 was made possible because of the previous inquiry from another gentleman named Cody.
Cody also was born with SLOS and desired to make a legacy donation to Smith-Lemli-Opitz syndrome research but sadly passed away before we were able to complete the process.
We honor his special intention which moved us to create our life-changing program.
Thank you, Matthew and Cody.
Your generous hearts will further SLOS research now and in the future and will improve the quality of life for children and adults living with SLOS in an immeasurable way. We will always be grateful to you and your families.