Monthly Archives: March 2015

And….the President Answers

  Dear Melinda: Thank you for writing, and for your service and sacrifice. I have heard from too many Americans whose lives have been affected by a wide range of health conditions and diseases. Whether they are common, preventable ailments … Continue reading

Posted in nnz 2566, Rett Syndrome, Trail to a Texas Trial, Trofinetide, white house | Tagged , , , | Leave a comment

The Blue Bird Circle Rett Center at Texas Children’s Neuroscience Center

A nice overall explanation of Rett syndrome, therapies available, and potential drugs (Trofinitide 🙂 ) that may lead to real treatment. Dr. Glaze is a marvelous doctor. He was so calm, committed and excited at every little new thing Katelin … Continue reading

Posted in NNZ-2566 trial, Rett Research, Rett Syndrome, Texas Children's Hospital, Trofinitide | Tagged , , , , , , | Leave a comment

The unseen- siblings of special needs kids

Originally posted on seizinghopedotcom:
Emily and I on a rare 1:1 lunch date The unseen-siblings of special needs kids Invisibility. That’s the superpower that siblings of special needs kids cultivate. Even if they wanted a different one like being able…

Posted in sibling sounding board, Special needs siblings | Tagged , , | 1 Comment


Originally posted on Colleen English:
We have been away for almost a week. There have been ups and downs. At the start things were fairly smooth. With time, they got rougher. Claire’s eagerness to be doing something gave way to…

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A Steeper Hill

Duncan Millar has written a marvelous blogpost about walking and Rett syndrome. You can read it on the Army of Us blog. Duncan is a whiz when it comes to finding amazingly cool ways to make a point through his … Continue reading

Posted in Army of us, Rett Syndrome | Tagged , , , | 2 Comments

A Call to Arms!

We have yet another chance to influence the course of Rett syndrome research! Paige Nues, Director of Family Empowerment, sent out an email…In part it says: As the result of meetings just held in Washington DC, many of our elected … Continue reading

Posted in Congress, Intrepid 2566, NNZ-2566, Peer Reviewed Medical Research Program,, TBI | Tagged , , , , , , , , , , , , , , , , , | 2 Comments

The Luck of the Irish (everybody’s Irish today)

. . . We all hate Rett syndrome, but despite that, we parents, grandparents, siblings, guardians and caregivers are lucky in ways because of it or inspite of it, we find inspiration along the way; and today it’s all about … Continue reading

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A Lucky Shamrock

Borris, another parent, scatters shamrocks for me amongst his posts. It makes me smile and feels like the little sprinkling of fairy dust that made Peter Pan fly, only I don’t fly, but I do cheer up, and sometimes that’s … Continue reading

Posted in Fragile X, Intrepid 2566, Rett Syndrome, TBI | Tagged , , , , , , , , , | Leave a comment

A Road Too Long

The other day, Katie got upset over something. I knew she would be, so I prepared her best I could, but she still got “so mad” and bit me. I was really angry. Angry at Rett syndrome for stealing her … Continue reading

Posted in Rett Syndrome | Tagged , , | 4 Comments

Onward and Upward with Little Girl Steps!

From Yesterday held a webinar with Steve Kaminsky on the important topic of participating in clinical trials. If you missed it here is a link to the audio. We will all move toward a cure faster when we … Continue reading

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