Ahhhh. Thanks Steed/Kryptonite.Certainly does seem on the...

Ahhhh. Thanks Steed/Kryptonite.

Certainly does seem on the surface to all be legit and would be made easier with Acadia having ROW rights.

Maybe in the next few months we might see the beginning of Daybue in Europe???

I can imagine Rett communities globally would be doing everything in their power to find a way to gain access, rather than waiting a few years and when you read stuff like this you can see why....

Hannah’s 26 with atypical Rett. Walks, rides a random bike with me, limited hand use but has always been verbal. Started May 20th at 50mg. Yes definitely more attentive in what’s going on around her. First few days more alert. We notice things in stages nothing new for 4-6 weeks and then several things then nothing for awhile. Less hand wringing and less teeth grinding. She’s actually looking both ways when crossing the street. She has always been verbal but sentence structure is so much better. Today she had 3 amazing sentences:

“My glasses are smeary because I touched them.”

She’s never noticed her glasses were smeary before today. I’ve been telling her not to touch the lenses for 3 years. Lol

"I rode Penny yesterday and she's a Bay horse. I don't think the black horse is a Bay horse."

"That's a fancy car, it's pretty cool."

Yesterday she rode bareback for the first time and actually turned around backwards on the horse without freaking out.