Through the participants , investigators, ceregene company, [i heard the cere120 employees are mostly laid off], researchers, readers, caregivers, consumers, medical doctors for anywhere on our body....lol...can we create the story? It seems a practical way to discuss everything that is on our minds about all clinical trials with all of those involved in the cere 120 trial. The Cere 120 Reality story....everyone swears an oath to tell the truth.

This always happens; you think you've done [and had!] enough...today this idea just focused even tho others are at their own story versions quite possibly...this idea isn't original, but doing it here would be. Let's write the story. I'm starting with Carolyn. who so many of you know. I'm inviting Dr. Michael Rogan to be the MJFF observer, who is welcome to join in at anytime [I've already begged and explained enough about why I think we should communicate. ]

This kind of story you can't make up as well as the real story will be, please join us Dr. Rogan. I don't think we knew what we wanted to talk about; in spite of all the pleading and the need to have it include many disciplines. This is an ideal topic and an example of many issues on our minds .

Carolyn is ..[carolyn who are you? type it on your thread please].....she can write out how much personal info that she wants to reveal on her own post, but i will introduce her from a patient consumer and advocate viewpoint.

I have known Carolyn for quite a few years now. She is a great Internet correspondent; is not afraid of emotion, very informed and knowledgeable. She is one of the pipeliners who find and supply information; it's like our food supply in importance to us. I think I consume more information than food most days. She will correct any of my mistakes, but every attempt to be accurate will be made from this end. It will soon become apparent how little has been revealed to us, especially by those who know more...., and we think this clinical trial can be the best teachable moment in our struggles to be a part of the solution.

As you will learn about, Carolyn had a fall, which has been labeled a seizure, while in recovery from the trial's gene therapy. From brain swelling, as Carolyn called it, she was in a - would rather she label it - but it seemed semi-lucid state - for about a week, with memory lapses and many yes/no responses. Carolyn reported that she couldn't stop an activity, like brushing her teeth; she didn't know how to initiate the end of the task. Carolyn recovered; maybe she can discuss it in more depth.

Questions- I'll post and then try to categorize, each time I add another post. Some of these are freshly thought, I just talked to Carolyn on the phone. She isn't afraid. Off the cuff, first post:

Someone speak up nicely if we post something confidential, please, I will try not to.

1. seemed fast and unexpected - did the last participant just meet his year in Oct.? Then the "results" announced a month later?

2. what else will you publish and how soon?

3. Many of us have been stewing about the differences in substance between phase I and phase II in the reports. Phase I being reported in percentages of improvement, with a follow up article saying they continued to improve. Phase II was discontinued with a statement saying the placebo and treated were the same.

4. Who are the responders? Who felt better? Any patterns spotted?

paula
kindly reply