My name is Blanca Wainberg and I live in Panama City. I´m taking the liberty to contact you because I would like to contact Dr. Riordan and I was hoping you could help me with that. My son is now five years old and he was diagnosed with DMD since he was 2. As any other concerned parent, I will do anything to help improve my child's life. S please if you could me this little favor I would very much appreciate it.
My name is Benjamin Messonnier i am a friend of Ryan from Facebook ,i am sorry i send many e-mail to you because i need your help for show to french association of muscular dystrophy that the thérapy of the Dr riordan is a reality and could remake dystropheen
that why i think , if you could send me the diagnostic and document of Ryan for show that Ryan have a duchenne muscular dystrophy and the result of the traitement of Dr riordan for see the level of dystropheen
I just wanted to say hello and check in with you. It has been too long!! I have been thinking of you, Ryan and your family and hope all is going well. Maybe we could talk on the phone and catch up on things.
We keep you all in our prayers.
I am so sorry to hear about Dr. Riordan's clinic. I am sure you and your family must be very upset. It is extremely disappointing for all of us.
I may be way out of line here, but doesn't the timing seem a little strange?? You have made the effort to let Ryans story be known.. and now the clinic is shut down??? It almost seems as if someone is making sure that the subject is closed.. on stem cell treatments.
I know you are getting swamped with messages. Let me know if I can help in any way.
I am in India and am in touch with 3 doctors who had done/doing MSC treatment for DMD patients in last 6 months. Results are still awaited. Unfortunately, these were not done under any protocal.
Yesterday, I met another doctor/stem cell reseracher who is interested in starting clinical trial under CTRI ( Indian government trial site) with Adipose derived MSC.
I wanted to connect with Dr Riordan so as that I can connect these 2 and learning can be consolidated.I wanted to get more details on the ryan's case. Can you help us out here.
Also plese keep us posted on any further updates here.
I was sorry to hear that your mother had to have surgery. I hope she is doing okay. I have been following the comments posted after your story. I could continue to post more, but I though I might wait until Pat makes a comment. Did you have any luck contacting her? I will continue to follow. Let me know if you need anything.
Thanks for coming out with this information to our families. I am interested, we did PGD/IVF to add to our family, but to also get the stem cells from our babies umbilical cord as well as placenta for our sons future. It was just in case something like this came along.
I will absolutely be glad to help by commenting on the posting that you have made. I will also suggest that they invite Ryan to the meeting in Denver. I want to be sure..have you already posted or are you going to?..I was looking for it on PPMD and did not see anything from you..or am I looking in the wrong place? Just let me know so that I can be sure to put my comment with it.
Congratulations to your daughter and her graduation! I am sorry to say, but on the 15th we will be in Kansas City for my daughters dance recital. It is a big event for her. But, hopefully sometime soon..maybe this summer, we can all get together. It would be great to meet you, Ryan and your family.
Take Care, Lisa
Sorry this took so long. I am so glad to see that you feel the same we do regarding PPMD and their attitude toward stem cells. You are right..it is absolutely time that we begin some trials using stemcells. I think the problem is the almighty dollar and Big Pharma..so sad!
We would support you and Sandra in any way we can. I am so excited to hear that your news station is going to do another story on Ian. We will be anxious to see it. It is great that you have those connections..
Our problem with Tirstan is that we do not have any scientific proof, as you do, with Ryan's dystrophin levels. It would be difficult for us to go public, trying to prove the effectiveness of the treatments. But, yes, I agree it is time to push the issue, and there will be some backlash as you said. But I think there are many discouraged parents out there right now and the timing might be just right.
Please let me know if there is anything we can do.
How are you all doing? Spring is finally on its way so we are excited about that!
I am sure that you have seen all of the recent news from PTC therapeutics. I am soory that the drug trials didn't work out. Many people are very sad and disappointed. I would have been all for it--if it would have worked.
I feel like I just want to scream "can we try stem cells now??" how about we put some money into that?? what do you think??
I have not received an update on the 7 year old Venezuelan boy. We have only spoke with Dr. Riordan once since Xmas and only briefly. The only way this can move forward is to have an organization like MDA or PPMD fund a study. However, they don't appear to be very interested in stem cell treatments. Not sure why, perhaps they are afraid the phara industry will decrease their donations. Something needs to happen soon. Both Ryan and Ian are doing very well and for Ryan's biopsy to show normal amounts of distrophin is remarkable. I would think there is enough data to support funding a trial.
All is well here in Wichita, although the cold weather needs to go away. The holidays were wonderful and Ryan continues to do well. He and several of his friends went to OKC on New Years Eve to a Flaming Lips concert. Not sure I have ever heard any of their music, but they are one of Ryan's favorite bands.
Ryan continues his water therapy at least 3+ times per week and he's is making incremental strength improvements. Additionally, his overall health has been great. He still has not had a significant cold since he started the treatments in Aug 08. This is remarkable considering that prior to the treatments he would have several bad colds every year.
I last heard from Dr. Riordan about a month ago. At that time he had talked with the MDA Medical Director – Valerie Cwik – and owed her some detailed information in a follow-up conversation, which I have not heard if he had with her. He had several discussions with Prof. Ben Palmieri from Italy, who has co-authored many papers on DMD. He plans to visit their office in Costa Rica this month and may stop by Wichita on his return to Italy to see Ryan. Finally, he said that his clinic in Panama treated a 7 year old DMD patient from Venezuela and his CPK levels had a dramatic drop and has also improved clinically. They have not yet conducted a biopsy. This is a big indicator that the adult stem cells have the potential for young boys to be treated and maybe have a much normal life. I’ll keep you posted as I learn more.
Its good to hear that Tristan is doing well with the treatments he is receiving and I pray for his continued success.
P.S. I noticed you posted your comments at 0137 this morning. YIKES!!!
I hope you and your family had a great holiday and a Happy New Year. I just wanted to touch base and see how Ryan is doing. Hopefully he is continuing to improve. Tristan is doing really well and we are all pleased.
Let me know how things are going. Take care, Lisa
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?