I’m so absolutely wiped today so this post won’t be full of the witty smartassy brilliance I know you love (eye roll) I’m just popping by to share some new words I learned today (tadaa!) Grace had her neurology appointment today and the Dr said something to the effect of: “…Grace’s intractable epilepsy…” “Her…what?” So...
If you follow Rett research closely (or maybe even loosely), this will be a drug name you’re familiar with. My Google analytics tells me it’s one of the most popular searches currently bringing people to this blog so I know you’re out there and looking for information about this potentially groundbreaking new medication and the...
Note: This post may be easier to understand if you read this one first. In the summer, RSRT published an announcement entitled “Statins Suppress Rett Symptoms in Mice“. You know me, always here to help break these things down in plain English. I know that title looks pretty bold and exciting. And it is! But possibly...
by Elizabeth Halford, with contributions from Steve Kaminsky, Ph.D., Janice Ascano, Ph.D., Paige Nues, Monica Coenraads and Kori Coates. As of late, there’s been much buzz about gene therapy as a potential treatment for Rett syndrome. And for good reason! Gene therapy isn’t new. In fact, it’s been used to treat a number of disorders, among them: retinal disease, acute...
Grace and I spent yesterday and today at Southampton General Hospital having a couple of tests done to prepare for her g-tube surgery next month. So for 5 days leading up to her appointment, she was off all of her meds. We expected a hellish few days and….nothing. No crying, no pain…nothing. She had a...
Steven went to his first solo Grace appointment. This one was a bit silly because she was prescribed shoes even though she’s never even acknowledged that she owns feet. So she got fitted for these custom-made pink leather boots which probably cost £200. She’ll wear them in her standing frame. Today, we picked up yet...
