50 Years of Rett syndrome

andreas-rettWhat I wouldn’t give to be in Vienna right now. You guys in Europe are SO lucky! Today is the last day of the RTT 50.1 conference. What is that? A milestone. 50 years since Dr. Andreas Rett published the first article recognizing Rett syndrome. Of course that’s not what he called it, Rett syndrome was named after him at a later date. And, over the last three days Vienna has been witness to some of the most prominent people involved in Rett research and awareness- our very own Kathy Hunter and Paige Nues are there (incredible women) and Dr. Percy, Dr. Kaufmann, Dr. Neul, Dr. Huda Zoghbi,  along with leaders in the field in Europe and other countries.

How lucky are we parents whose children see one of the doctors that are SO prominent that they are there? Katelin has seen both Dr. Kaufmann and Dr. Neul, amazing doctors, and I’ve heard nothing but praise for Dr. Percy, and by praise I mean glowing, heartfelt admiration. Of particular note, for me, is Dr. Helen Leonard of Australia. I’ve spoken to her several times. She has been behind the largest collection of data and database of Rett syndrome mutations and correlations between mutations, symptoms and severity. You can participate in her questionnaire by going to aussierett.org.au

Just take a look at this program! The incredible scope of topics and minds that are contributing to this conference is humbling. In only 50 years, thanks  to one man’s curious mind, this, THIS all has come to pass. In just 50 years. What a time for our children to be born into, one with HOPE, RESEARCH, PROGRESS! I really wish I could be there, and I don’t really have the desire to travel overseas, but for this, oh, yes, I do.

Thank you, Dr. Rett. Thank you to all the researchers, parent advocates (special shout out to Kathy Hunter, the author of the Rett syndrome Handbook) and doctors who believe in our girls and boys.

Read the original article, translated into English-here.

For more information about Dr. Rett- click here.

No one can look at the lineup for this conference and not feel the optimism, that despite the challenges that are sure to be mentioned, there are options, ideas, HOPE. Amazing.

This entry was posted in cure, Dr. Walter Kaufmann, hope, Rett Research, Rett Syndrome, rettsyndrome.org and tagged , , , , , , , , , , , . Bookmark the permalink.

2 Responses to 50 Years of Rett syndrome

  1. Thank you for this empathetic article. I am sorry that I only found out now, just coincidentally while looking for all WRSC since Dr. Rett has described the disease.
    As I have been working with the Austrian Rett Syndrome Association to organise this outstanding, very touching conference, I will express my thankfulness to spread the word ” LIVE LOVE LEARN ” of our beautiful angels

    • melelllan says:

      Wow! Thank you for putting it together. It was written totally with jealousy for those who got to be there. A friend of mine from the French Assoc. was there, he spoke very highly of it.

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