sorry, but this thread and the personal aspect made me look a little deeper into the hope that this drug might oneday give families, some FB posts from families that have heard about NEU's Drug
IRSF - International Rett Syndrome Foundation · 9,718 like this. 16 May at 07:16 · ..
IRSF is pleased to report Neuren Pharmaceuticals held a meeting with the FDA seeking guidance for the first clinical trial in older patients with Rett Syndrome. The Investigational New Drug application is the precursory step before starting a clinical trial. This announcement portrays the importance of partnerships between industry, academia and private foundations like IRSF to accelerate bringing forward clinical trials specific to Rett syndrome.
IRSFlash - Research: 5.11.2012 www.rettsyndrome.org The Investigational New Drug application is the precursory step before starting a clinical trial. Other than FDA staff. NNZ-2566 is a drug that Neuren developed with the Department of Defense to treat mild Traumatic Brain Injury (mTBI) and has been shown to have great success in mTBI animal models.
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Heather CureforRett and 164 others like this..
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Vivienne Marshall Is this something we should all get excited about???
16 May at 07:21 · 3..
Claude Bernier we're talking 5 or 15 years ?
16 May at 07:49..
Jennifer Endres This is so very exciting for the Rett community!
16 May at 08:37 · 1..
Aaron Hollingsworth Is this a possible cure or just something to help manage the symptoms?
16 May at 08:44 via mobile..
Lisa Hayden Geglein Vivienne - This is a very exciting announcement for Rett syndrome! This drug has been shown to have success in animal models which suggest there is potential to increase the re-wiring of the Rett brain to hopefully reverse Rett symptoms!
16 May at 08:48 · 4..
Branka Novakovic Exiting. Does anyone knows what symptoms are reversed ?
16 May at 09:15..
Vivienne Marshall Lisa. It sounds great news. I have not got excited about news like this before as I thought it would be for younger girls. But this trial talks about helping older girls. How old??
16 May at 09:17..
Paige Nues This IS something to get excited about Vivienne! And Claude, we are hoping truly hoping the approvals will get secured to begin the trial in months, not years. This is not correcting the MECP2 gene mutation Aaron, but the hope is it will correct som...See More
16 May at 09:30 · 7..
Donna Davis Miller My daughter is 40 and ambulatory. She is overall very healthy. All her nutritional needs are met with oral intake. I would love to see Deena be a part of the trial!!
16 May at 09:33 · 5..
Lisa Delaney How would we become part of the trial? My daughter is semi-ambulatory and is very healthy. She is 30 years old.
16 May at 09:50..
Mari Serrano Muniz Wow that good news hope it go through ..My wish is for all the lil angel to get cure because i know how all this moms feel because my grand daughter has it too. I love her to death
16 May at 11:19 · 2..
Mary Johnson Wilkinson I'm speechless, most talk has been about younger girls with RS. My daughter is 31, ambulatory and healthy. I feel now there is more hope for my daughter than I had felt before. Thank you for sharing this news.
16 May at 11:31 · 6..
Mickie McCool What an awesome and hopeful first step!
16 May at 11:41 · 3..
Steve Medlin Wow! Fantastic News! Now work faster....thanks!!
16 May at 12:10 via mobile · 2..
Paige Nues Drs Glaze and Neul have assured us they will let us know when they are ready to seek participants. First, they are waiting for FDA approval, then their own IRB. This will take time to materialize, but you need to know and be excited that it's coming!
16 May at 12:38 · 4..
Betsy Delahunt Absolutely marvelous! Keep up the good work.
16 May at 13:15 · 1..
Paige Nues I agree Henrietta! It is a new drug. We don't know if this one drug will be the magic bullet to reverse RTT symptoms, or if it ultimately will require a cocktail. But try we must to push discoveries out of the labs, and into safely helping our children, and this one looks promising. A Phase I clinical trial is the "try safely" part.
16 May at 16:28 · 4..
Erica Bessey Robertson so so so wonderful!
16 May at 17:10 · 1..
Vivienne Marshall Tears in my eyes as I read these posts. So many people, with so much hope for there daughters. Rett is a cruel syndrome. We all want to see a 'magic pill' to help our daughters. Hope all goes to plan, and hurry up and send it over the pond. Waiting!!
16 May at 22:09 · 1..
Kathy Richardson My niece is 10 and not doing well, she is on the worse side os the spectrum. I hope she would be a good canidate!!!! I truely hope that this will come to life for all the girls sake!!!
17 May at 02:31..
Helena Oliveira Will this new drug help our girls to regain cognitive and motor abilities? This is a very good news, I'm anxious!!!!!
17 May at 05:00..
Silvia Salcedo From Bolivia South America this is a very good news. God bless you all
17 May at 07:05..
Kim Stolen-Adair Keeping my fingers crossed, that this can help all effected by RS. To late for my daughter who has passed away at 29. However I stay in touch with other people with kids.
17 May at 11:47..
Paige Nues Kim, I wish we could turn back time too, but it is the lessons learned from your daughter and others that have come before that have paved the way for this future. I hope this gives you some measure of comfort, truly.
17 May at 13:59 · 1..
Bridget Angell There could be difficulties in consent to allow the older girls to partake in any future trials. Otherwise very positive news everyone.
20 May at 12:24 via mobile.. .
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