Frequently Asked Questions

What is Sturge Weber Syndrome?

Sturge Weber Syndrome is a rare disorder that is present at birth.  A child with this condition will usually have a port-wine stain birthmark (usually on the face) and may have nervous system problems which result in seizures, developmental delays, and other related issues.

Where can I donate?

When is your next event?

Our next scheduled event at this time is June 26, 2017 – The 10th annual Jachin Jordan Golf Outing.  You can register for the Outing here.

How can I help with an event?

We are always looking for volunteers leading up to the event, as well as for the day of.  Donations are also welcome, whether it be monetary, or a service or item that could be used for a raffle or silent auction.  Contact Ellen at to get more info!