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Sunday, October 21, 2012 |
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Brady Update
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| Hi guys, it’s been a little while since our last post! Sorry for the delay but we are trying very hard to remain discrete. Brady completed his part of the trial at the beginning of August; however, we are still unable to share details until the trial is fully complete. Hopefully something will be published pretty quickly after the last participant’s visits in Feb.
I totally understand that everyone is anxious, nervous, and excited. We are even anxious to know all the results, as we only know about Brady. Many people have asked "why can’t you talk about the trial", so I will try to explain. The Tampa team does not have us under gag orders....they never told us that we couldn’t talk about it; however, after learning the process, we all agreed that it would be best to be as discrete as possible. The Mino Trial has no placebo, which means that all 24 participants get the real medication; this decision was made by a board of many specialists. Much of the info that the researchers receive, is based on parental report.
Brady was one of the first to start the med and first to complete his part of the trial. If we spoke to those who have not gone or are still in the middle of the trial and told them what we did or did not see, it could influence what they see and report to the researchers. The info that the parents report should be based on what they see or don’t see, rather than what they expect based on other people's experiences. We hope to have concrete and accurate results, not results that have been skewed by people comparing notes. Aside from this, if participants began reporting seeing positive results during the trial, it might influence others outside of the trial to put their children on Mino.
I’m sure that this has already happened; however, there is no real way for many to know proper dose of mino in the possible treatment of Angelman Syndrome. If too much is given it could have negative effects. If too little is given, it may have no effects. So while I know that everyone is eager to find out what is going to happen, I urge you to wait and get all of the details next year. The point of a trial is to see if this medication is an effective treatment but also to determine proper doses, schedules, etc., if it is a treatment. Being patient can be so difficult when it comes to your loved ones but please hang in there and give it just a little more time. Be excited in knowing that big things are happening in Angelman research :) Our researchers are working extremely hard to find an effective treatment and we have so many potential treatments already out there. It’s not a matter of if we will one day find a cure; it is a matter of when. We just have to have faith and keep raising funds to make it happen ;)
Sorry for the long post but just had to say all that. Btw, Brady is doing amazing these days. July was one year since his last hospitalization/coma; he has remained seizure free to date :) I will try to post some pictures if I can get them to upload and I promise to share trial info just as soon as I can. Hope you all have a blessed night.
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posted by angelwings
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3:04 AM
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How wonderful to read that Brady is doing so great. These are the most exiting times, and we all are very eager to learn everything about the trial. Keep us informed, if you will.
All our love, Klein family, The Netherlands.
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Gracias por mantenerlos actulizados respecto a Brady ,espero que todo siga como ahora y presiento buenas noticia los proximos meses una bendicion para todos los angeles.
nuestros cariño ,familia Badaloni,
Argentina
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| About Brady |
Read Brady's Story Here
I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day.
My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.
See my complete profile
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Interactive Seizure Diary |
This
downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.
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The AS Forum was created in April
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The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.
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How wonderful to read that Brady is doing so great. These are the most exiting times, and we all are very eager to learn everything about the trial. Keep us informed, if you will.
All our love, Klein family, The Netherlands.