Chatty Kathy

Just recently back from the World Congress on Rett Syndrome in Paris, France.  It was a good program with lots of stimulating discussion and much good information on the current state of research and clinical care in Rett syndrome.  The proceedings of the meeting will be published in a future neurology journal, and I assume that a meeting recap will be published the French Rett Syndrome Association, AFRS, and the IRSF.  It was wonderful to see so many of the people with whom I have worked for the last 25 years and so gratifying to see Rett syndrome take such a prominent place in the research arena.  Kudos to Dr. Helen Leonard of Perth, Australia, for organizing such a great meeting.

Scott and I are now in Shannon, Ireland, for the Ireland Rett Syndrome Association Conference and Family Day meeting on October 31.  See here: http://www.rettsyndrome.ie/.  We have met a few parents today and look forward to meeting the whole group tomorrow. It never fails to amaze me that no matter what geography, no matter what language we speak, the Rett syndrome picture is the same all over the world -- beautiful girls with luminous, searching eyes and parents reaching out for help and hope.   

  

Sorry I have not been more "chatty" here.  It has been a very busy time at the Hunter house. After a week long Harley ride through the glorious mountains of Colorado with two other couples, we have now settled back in at home.  All of the four grandkids are now back in school and the fall sports schedule has greatly expanded, so we are on the go constantly. We have reduced Stacie's time at her day program from 5 days per week to 3 since we are both at home now.  She thoroughly enjoys her "time off" and we are happy to have more time with our sweetheart close by all day.

Scott and I will be traveling to Paris next week to the World Congress on Rett Syndrome, where I will deliver a presentation on the parent perspective of feeding problems. I am looking forward to meeting old friends and making new ones.

Once our travel schedule slows down, I will have more time to devote to updating RettHelp. Please be patient -- I am a cyber duh and have a learning curve to figure all of this out!    

  

 

I am happy to see that traffic is picking up here at RettHelp.  Don't hesitate to contact me with your suggestions and contributions.  The grandkids have just left the beach for home and return to school, so things are a little less hectic here.  Stacie is thoroughly enjoying her time in the sun and surf. She thrives on it! 

Finally, we are up and going! I look forward to blogging with you here at RettHelp. Scott, Stacie, and I and our three dogs are currently in Myrtle Beach, SC, where we will be for the next month. Stacie absolutely loves the ocean, sitting on the beach, going out to dinner and getting pampered. I am new at blogging and my computer access has been spotty, so please have patience as I learn the ropes. Welcome, all!