RACHEL WATERS



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Contact Information

Email
rachel@hemifoundation.org
  Rachel's son Aiden, was born in 2004. He was diagnosed with a rare neurological disorder called Sturge-Weber Syndrome and underwent a right hemispherectomy on August 21, 2008 at UCLA’s Mattel Children’s Hospital. He is her inspiration for wanting to help individuals living with Sturge-Weber and their families. In September of 2008, Rachel became a California State Representative for the Sturge-Weber Foundation. It is her pleasure to provide help, support and encouragement to families whose lives have been touched by Sturge-Weber Syndrome and are considering hemispherectomy surgery. Because Sturge-Weber is considered a rare disease, she wants to help raise awareness in the general public as well as medical professionals so more doctors are able to diagnose this condition and give treatment options early on.

  Rachel "met" Hemispherectomy Foundation co-founders, Cris and Kristi Hall on the Yahoo Hemispherectomy support group in June, 2008. Their daughter, Jessie was about to undergo her hemispherectomy when Rachel was still searching for answers. It was then that Cris and Kristi told Rachel about The Hemispherectomy Foundation. The Hall's reached out and offered their support to Rachel through encouraging emails and by sharing Jessie's journey. After Aiden had his surgery, Rachel felt a need and desire to help other families going through similar situations, especially those with Sturge-Weber. Cris and Kristi invited Rachel to join their foundation and she gladly accepted. Rachel also redesigned The Hemi Foundation website giving it a modern look. Co-founders, Caren and John Jennings, along with Cris and Kristi Hall, worked so hard with Rachel to come up with all the great resources and information provided in this website.

A note from Rachel:
"I want other Sturge-Weber families to know they are not alone in this journey. I'm here for you so please call me if you have any questions or you just need someone who can relate to what you are going through. I consider you all my family."


Read about Rachel's son, Aiden.
Learn more about Sturge-Weber Syndrome
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