Big News!

Our kids can be saved!! Did you know researchers were able to reverse Rett syndrome in the adult mouse model? Click here to learn more Don't forget to watch the videos. They are amazing!

About SDRett

The San Diego Rett Syndrome Organization is a group of Moms and Dads of girls with Rett syndrome living in the San Diego area. We are dedicated to making the
lives of our children and each other easier. We get together once a month for lunch and conversation. We also meet online at our Rettoric newsgroup, we meet socially for BBQ's and parties, and we even help raise funds for research. Click here to make an online donation

About Rett Syndrome

Rett Syndrome is a neurological disorder diagnosed almost exclusively in females. Children with Rett syndrome appear to develop normally until 6 to 18 months of age when they enter a period of regression, losing speech and motor skills. Most develop repetitive hand movements, irregular breathing patterns, seizures, and problems with mobility. Rett syndrome leaves its victims profoundly disabled, requiring maximum assistance with every aspect of daily care. There is no cure.

More than 99.5% of Rett syndrome cases occur only once in a family

Girls with Rett syndrome suffer from apraxia. Apraxia is a neurological disorder characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning and may not be caused by incoordination, sensory loss, or failure to comprehend simple commands.

Fundraising

Fast approaching is the 4th Annual RSRF Charity Golf Classic. This is an industry-wide event benefiting the Rett Syndrome Research Foundation. Each year members of the insurance industry gather to raise money for treatments and a cure for Rett syndrome. The golf tournament will be held on June 15th at the Cottonwood Golf Club in El Cajon, California. Thank you so much to Deirdre Millwood and Lynda Stettler for coordnating this event. To the golfers, sponsors, and volunteers, your help is greatly appreciated! For more info, please contact Deirdre Millwood or Lynda Stettler.

The 4th Annual San Diego Run For Rett will be held in October. Run For Rett

Resources

All of the listed resources have been tried and are recommended by our parents. The doctors have provided satisfactory services to our children, we have prepared and served the recipes to our families, and the hot tips are ones we actually use. If it's listed, we recommend it.