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melelllan on A Decade of Hope Fa BEL on Daybue Trail: 2 Weeks Uni… melelllan on Daybue Trail: Two Months … Rune on Daybue Trail: Two Months … dian dana on Growing up One in a Milli… Archives
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Monthly Archives: February 2023
T – 14 (or less) Musing
By all counts the FDA will announce at most 14 days from today. March 12 being a Sunday it can go either way- the Friday before or the Monday after. Of course, they can announce any day now. In my mind, I’ve likened the last 6 months to a pregnancy. How it just seems to drag and drag at the beginning. You do your best to prepare, but what if you don’t know if it’s a boy or a girl? or if it’s twins? You know, like before the days of ultrasound ;). So much unknown, but you do have a due date- March 12! Continue reading
Posted in Acadia, Dame Margaret Brimble, FDA, hope, Neuren Pharmaceuticals, Rett Syndrome, Trofinetide
Tagged dreams, Hubble, Milestones, Webb
2 Comments
Claire
We end this shortened series with Part VII; Rett syndrome gets in the way of so much, even when we really want to accomplish something. I’m hoping that those who were unable to participate get relief soon. And so, here … Continue reading
Ashtyn’s Story
Part VI of this series demonstrates the human capacity to take adversity and find the good. In the Rett world, adversity comes at us from so many angles, but, if we’re lucky and if we have open hearts and minds, … Continue reading
Posted in acceptance, Communication, Education, Rett Syndrome, Trail to a Texas Trial
Tagged Ashtyn, Family support, Therapy
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T-20 Musing: Parents’ Helping Hands
I often see parents who comment on social media that they feel disappointed, or defeated, etc. because they were unable to participate in a clinical trial. But, it takes all types of participation for a trial and ultimate approval (hopefully!!) … Continue reading
T-23 Musing
I feel so certain that approval can come at any time now, I get to sit back and enjoy the hope and excitement of our community. Each little giddy remark makes me smile. How lucky am I do not feel … Continue reading
A T-27 Musing
Take a deep breath. My girl is crying- was it the dentist appointment, having to get off the bus, just a long day? All tricks pulled out of my hat, I just went in for a hug; she took a … Continue reading
Posted in Uncategorized
Tagged Dame Margaret Brimble, hope, Rett syndrome, Trail to a texas Trial, Trofinetide
1 Comment
T-27/30
Depending upon whether the answer comes on the 10th or the 13th, this is where we are; T-30 at worst (barring any unforeseen circumstances). And so, I begin my musings. What does it feel like, for me, to be 30 … Continue reading
Posted in Uncategorized
Tagged Acadia, Neuren Pharmaceuticals, Rett syndrome, Trail to a texas Trial, Trofinetide
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A Story of Hope
In Part V of this series, we examine the strength of Hope. One thing that Rett parents, and I dare say most parents of special needs children/adults, cling to is Hope. Even in the most dire of circumstances and conditions, … Continue reading
Lydia’s Story of Joy
Part IV of this series reminds us of the one thing that seems universal- that no matter how hard our lives can be, our children make sure we see the joy in the little things and that we endeavor to … Continue reading
Posted in Uncategorized
Tagged Daffodil trial, Joy, Lydia, Rett syndrome, Trail to a texas Trial, Trofinetide
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Time to Wrap it Up
Today is a date that might pass by without much thought for most, not me. Someone told me today they “live for deadlines”. Well, today’s a special deadline. With March 12 being the PDUFA date (the date the FDA has … Continue reading
Posted in Acadia, FDA, Rett Syndrome, Trail to a Texas Trial, Trofinetide
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Trail to a Texas Trial 