Tissue Donation

The Hope of 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 more forward without your help. Human tissue donated at the time of surgery or death by people of all ages, especially those who have a genetic or developmental disorder, is the most precious resource on which these researchers depend.

What Tissues Are Needed? Many different tissues from individuals with a PWS, SWS or K-T are needed for ongoing research projects.

How Much Tissue is Needed? Very small to very large pieces of tissue can be used in PWS, SWS, or K-T research. The important thing to remember is the removal of tissue should never be done for the sole purpose of research and should never raise any risks for the health of the individual.

Why Donate to a Tissue Bank & Not To A Specific Researcher? The primary reason to donate to a 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 surgery planned, please conact:

NDRI , the National Disease Research Interchange

Daniel C. Remer, Rare Disease Program Manager

NDRI

8 Penn Center, Suite 800

1628 JFK Blvd

Philadelphia, PA  19103

800-222-6374 x 257

This e-mail address is being protected from spambots. You need JavaScript enabled to view it

www.ndriresource.org

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