Please ignore my previous post i made a mistake..... Sorry
Joanne, we are very much in the same situation. We are still waiting. We got his echo and EKG a couple of days ago. No dates just waiting. I want to keep possitive and think that we have awaited over 2 years jsut a few more weeks doesn't look that long. My son is 10 and he stoped walking about 4 or 5 months ago. Trust me we want this yesterday, but unfortunately is out of our control. I don't want to get upset with Dr. Finkell and his team since i feel they are doing things as fast as the protocol permits. All i can tell you, coming from someone in the exact same position you are, lets try to be a little bit more patient, it will happen before we know it. We live in South Florida and will have to do a lot of traveling for the procedures, but that is a very small price. No blood work done as of today yet. As soon as i know more i will post it here.
Thanks Joanne, same thing here Teesha has been comunicating with me as well. We are almost there. As far as the hurricanes we have been lucky so far. Hoping it continues that way for the rest of the season. Do you know anyone of the 38 families from Utah who are already taking PTC124 as part of the pararell staudy??? If so, do you think they would mind joining this thread and start sharing a little bit of their progress?? The purpose here is to be able to share our experiences, progress, side effects (hopefully none) and whatever else we can to help each other looking for the best interest of not only our kids but the entire MD community.
Where do you guys live???
Joanne, thanks for sharing. WOW i went to Anthony's page and.... God am i excited. I pray this might be the outcome for ALL 38 kids on the study. This is crazy. You made my day. I also went to your page and i got to tell you, you have a beautiful family. God bless you ALL. I will create a page for Daniel and will share the address after done. I will attempt to contact them and invite them to post here or at least get their permission to share here some of their posts from their sites, that way other people might see it here as well. Anyways, thanks again.
Awesome, lets hope they join and since they are leading the pack we might have a lot of things comming from them we all might benefit and learn from. Also, yes i agree 100 % on the remark that DMD is the bigest challenge we have to face, but things are looking very promising now. I think we are living in exciting times as far as the new developments, the technology not only from the scientist perspective but from the communication as well. It is amazing that thru the internet we now can share info like never before and be able to help each other by sharing our experiences etc. Go bless, Jose
Humm. You are right. I think there is an issue with the site, because you can actually see our current discussion when you cklick on the discussion forum under reseach, and PTC124 Phase 2A Extension Study. On Monday i will contact the tech in PPMD and see if we are doing something wrong or in fact there is an issue with the site, that it isn't attaching the discussions to the groups. Regards
Hi Jose and gang,
Just checking in again. Do you have dates? It's Sept 10th now and we're still waiting. I've been staying in touch with them, but still not getting anything definitive. So yes, my patience is getting tired, as now we are into school and a million other activities. You're right we are lucky. We had my son's echo and ekg done in July in anticipation of an August date. Are you in the Philly area or will you be traveling? Have you started with the other screening with the blood work?
We're hanging in there, but a little anxious. My son is 12 already.