Although Sturge-Weber syndrome can be managed, there is no cure. Research for Sturge-Weber syndrome (as with all rare diseases) is often hampered by the lack of investigators interested in researching it or from an unavailability of tissue samples or the difficult to find clinical trial participants necessary to conduct a study.
Basic Research: Sturge-Weber Syndrome (SWS), and Klippel-Trenaunay (K-T), are just two of the perplexing medical mysteries whose answers will only be found with continued and dedicated research. For this reason, brain and tissue banks have been instituted with the expressed goal of advancing meaningful research.
The banks collect, preserve, and distribute human tissues to qualified scientific investigators whose compassion is strong, but whose work can’t move forward without your help. Human tissue of various types donated by patients and unaffected family members can be extremely valuable resources in the search for the underlying causes of and potential treatments for Port Wine Birthmarks (PWB), Sturge-Weber syndrome (SWS) and Klippel-Trenaunay (KT).
What Tissues Are Needed? Many different tissues from individuals with a PWB, SWS or K-T are needed for ongoing research projects: skin, blood, oral swabs and potentially other types of tissue donated by patients and sometimes by unaffected family members; brain tissue donated by patients at the time of surgery or death is another precious resource on which these researchers depend.
How Much Tissue is Needed? Very small to very large amounts of tissue can be used in PWB, SWS, or K-T research. The important thing to remember is that the collection of any blood or tissue samples can only be performed with informed consent and normally has little risk. Those donating samples should make sure they know why they are being collected and any possible risks that may be involved.
Why Donate to a Tissue Bank & Not To A Specific Researcher? The primary reason to donate to brain and tissue banks and not directly to one researcher is that brain and tissue banks are funded to help coordinate storage and distribution of tissue samples for research on developmental disorders.
Thank you for your thoughtful consideration on becoming a tissue donor. Please do not hesitate to contact SWF if you have questions about any aspect of this program.
If there is a planned surgery, please contact:
Dr. Ron Zielke
NICHD Brain and Tissue Bank
University of Maryland
655 W. Baltimore St BRB 13-021
Baltimore, MD 20201
Check out this video: Unraveling the mysteries of autism and otehr developmental disorders
If death is imminent call 1-800-847-1537 day or night and ask for the Project Coordinator on call. State that is an EMERGENCY, otherwise the answering service may take a message rather than calling the NICHD Brain and Tissue Bank.
A Family Shares Their Joy
“We are thrilled that our experience walking through Theo’s hemispherectomy surgery may have benefits that are far-reaching to the Sturge-Weber community. We were able to donate the affected tissue removed, the entire left hemisphere of his brain, to aid in research and serve to better inform others in the future.
We just celebrated Theo’s 6th birthday. It is amazing how our lives have changed since his surgery. He is a new little boy, so engaged and full of life.”
Brandi & Peter Shamberger
A Donor Family Speaks Out...
Is tisue donation important? Is research to find answeres to our questions possible without it? Let me tell you a story about a young man that affected the lives of so many, and his memory and legacy contineus even after his untimely death. Read more
Story of the Snuggy
Children who have had brain surgery are special to us. To show our appreciation in a tangible way, we have been sending fleecy nap-time snuggy blankets to children who have had surgery and donated their brain tissue. It brings extra comfort in the hospital, at home and at those frequent doctor’s visits. The snuggies are handmade with special attention to the child’s favorites – colors, cartoons, hobbies.
Along with the snuggies, children receive a Teddy Bear which was first started by an SWF family to memorialize their daughter who had died.
We tell the children “This Teddy bear is named Hope. We know how brave you have been and will continue to be, because you have Hope by your side.”
These are happy children enjoying their new blanket and Hope the bear.