Until end of June 2018, we will donate all proceeds from sales of So Vividly So Desperately and the jewelry on this site to support the search for a cure for Sturge-Weber Syndrome.
Sturge-Weber Syndrome is a rare, serious condition that affects children and adults across the world. It is a condition one is born with. A port wine stain in the face is usually the first and most visible symptom, but it is the least to worry about: Sturge-Weber Syndrome often causes seizures that may be difficult to control. Also, it can cause developmental difficulties and glaucoma. Outcomes can range from very severe to hardly noticeable. They are impossible to predict: Affected families have to take life step by step, every day.
Sturge-Weber syndrome has been described first in 1879. Its cause has been unknown until May of 2013, when a mutation of a gene affecting a particular set of cells during the course of pregnancy was discovered to be at fault.
The gene affected is fairly well understood. Mutations to this gene are also believed to cause certain cancer types. The discovery of the mutation now offers a unique opportunity for a targeted search for better treatment, or even a cure – an incredible source of hope for all affected and their families.
This research will cost money. Every purchase you make will directly contribute to meaningful research in this field. We appreciate your help, tiny or big, in any form it may come. The organizations we plan to support are:
- The Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Institute in Baltimore. Researchers of the Sturge-Weber Center have been core to the discovery of the root causes of Sturge-Weber Syndrome.
- The Sturge-Weber Foundation. SWF is a non-profit organization founded by families affected by Sturge-Weber Syndrome that has played an important role not just in funding and motivating research, but also in supporting families.
Thank you very much, again, from all my heart, for your help.
Finally, you can of course also use the donation pages of these organizations directly: