Thanks Curt, that would be great. If they don't want to share their experience I understand. Although it does make things easier if they could, we parents need to stick to gether. I'll wait to hear from you on that issue.
With the encouraging news about adult stem cells, and especially in light of several DMD boys passing away this week (there were 4, god rest their souls), do you think its possible for other families taking the treatments to contact us here at PPMD to tell their stories?
Anyway, we have monitored Tristan's CPK levels since his original diagnosis and it has dropped significantly. I do think that the dystrophin level increasing on Ryan is much more impressive than dropping CPK levels. Maybe we could discuss it sometime. But it is good to hear that there is another DMD patient who is having success with stem cells.
It is good to hear from you. I am glad to hear that Ryan is doing well and continuing to improve. Our trip went very well. Tristan is continuing to improve, slowly but surely. He has gained alot of strength in his midsection and some in his arms. He is also kicking his legs alot and just moving his whole body around more. He is definately feeling the difference and is very excited. We had alot of family here for Thanksgiving--and everyone commented on how great he is doing.
That is exciting news about the 7 year old. We have monitored Tristan's CPK levels since his orig
Just heard back from Pat, she's expecting Lee Sweeney and Dr Riordian to speak within a few weeks. Don't really know what the hold up is for them to have a conversation but I do expect it will take place soon.
Thanks for letting me know. I will ask Pat if she is having her researchers concact Dr Riordan, and that he is still waiting for their contact. It would be best if they could complete their conversations and let us know their findings...dmd kids shouldn't have to wait!! Please let me know if anything changes, if you don't mind.
Thanks Curt, I appreciate your keeping me posted. We've been waiting for more news about Ryan and stem cells but can wait longer if necessary. Glad Ryan is doing well. We've had similar experiences with Southwest and American airlines, as what you mentioned. I guess ADA regulations here in the states have paid off for our guys :) .
In case you haven't already seen it--I just wanted to let you know that there is some information about Ryan on the Repair Stem Cell Institute website. Look under donmargolis.com/blog. It was good talking with you.
You can't imagine how hopeful we are that what is working for Ryan might possibly work for our son and all the others. We've only been at this DMD fight for a couple of years but every time I hear/read of another death part of me dies along with each boy, and this happens at least every other month. Please send well wishes to Ryan from the Cliff family. Of course we will be looking for more information to be released as soon as possible.
Needless to say, we are hopeful that Dr. Riordan's treatment is effective against DMD. Given the noticeable absence of details and data, I think skepticism is the reasonable view at this point. Whether the Doctor offers treatment based on personal relationships, for altruistic purposes(to simply help those suffering from MD), or for pure profit makes no difference to me. I'm fine with any of those reasons. They are all legitimate. If the Doctor is for real, however, he'll soon make all data and studies available. If not, he will be secretive and will resist inquiries for information. Take all steps necessary to preserve your patents, copyrights, and formulas, but soon give the world details as to what's up. In other words, "Show me the Money", or you'll soon be dismissed as a false prophet.
Thank you for your comment. I feel as though anything positive is just that.... positive. I was going to try to get in touch with your family as I have so many questions. And I actually celebrated a bit when I heard the news of your son doing so well.
I did call the clinic but only recieved an email stating that the doctor had many calls and basically ran out of funds during the first 3 patients. I do have a few questions for you if you can answer them .... My first questions is, will Ryan have to have the treatment over and over again or are the cells injected regenerating correctly themselves? Since my son was diagnosed I often thought of a direct injection of some sort, but the doctors said that it wouldnt work. My husband and I, probably like so many others, have so many thoughts and questions, however like I said before we are quite new at all of this and have no where the amount of information as others in our position do. I along with my husband would love to speak with you.
My private email is firstname.lastname@example.org and my phone number is 609-425-1492. I would appreciate any information or suggestions you can give us.
Again, I thank you for your comment and I look forward to hearing from you if possible.
I am so glad that Ryan is continuing to improve. It is great that he is able to exercise without the flotation device. And WOW--so exciting that his heart is now normal. I am glad to hear that the other boy receiving treatment is improving too.
I have always believed that the answer lies in stem cells. I have tried to reach out to a few other parents on PPMD, but the overwhelming negativity toward the subject was unbelievable, so I just decided to do my own research.
We would love to talk with you on the phone about our own stem cell experience. We, like many others have not shared our story because we did not want to be scrutinized, as you have been. We felt that it was important to stay as positive as possible.
-Our number is -816-431-4060. We are going to the KSU VS MU game in Manhattan tomorrow. (I grew up in Manhattan)--but we will be home all day Sunday--or anytime you have a chance.