Thanks for the posting. It is perfect. I will be emailing Pat directly this weekend. She asked the reporter for us to conact her again. She wants to ask us some more questions. I'll keep you posted...curt
Its always good to hear from you. I have been waiting for this newscast to launch my quest to get PPMD/MDA to sponsor a medical trial with stem cell treatments. I am going to be very persistant and you can help by responding to the posting that I made. I would like PPMD to invite Ryan to attend the annual convention in Denver. Perhaps you could suggest it in your posting.
Not sure if you will be in Manhattan for KSU graduation on the 15th. If so, Ryan's sister is graduating an we will all be up there. It would be nice to meet you and your family.
LIsa, All is well on our end. Ryan continues his workouts as much as possible. I did find out that the followup televison piece will be aired in May. I gave the reporter Pat's contact information and she is going to try to speak with her. I am still planning on posing some difficult questions for her and the PPMD board on stem cell research. I'll let you know before I launch the campaign. Take care and keep me posted on Tristan's progess. Curt
Lisa, Its great to hear from you. When I received the emails about the PTC trials last week and read the results, I was a bit angry. Not about the results, but that there has been no movement on stem cell trials. It has been a year since we first contacted PPMD regarding Ryan's biopsy results. We could not wait to tell the DMD world, assuming that there would be great support, but instead there was silence. Not from the parents, but from the "experts".
I spoke with my Sandra last night and we are ready to be much more outspoken. We need to move forward with a stem cell trial NOW. 'm not sure if I had told you, but one of our friends here in Wichita, have a son with DMD. He went down to CR last summer for his first round of stem cell treatments, with Dr. Riordan. He is a couple years yonger than Ryan, but further regressed. He is experienceing the same results as Ryan. Significant weight gain, more endurance and better health overall. The same news station that did the piece on Ryan is gong to to a followup and include information on Ian.
I know that there will be a backlash once we start being vocal, but its past time to focus on something that has positive results. I garurantee you that any DMD boy that is walking, wh receives the same treatments as Ryan, will significantly increase their 6 minute walk.
What do you think about going on the offensive with PPMD and their suppport for a stem cell trial?
It is good to hear that your holidays were wonderful and that Ryan is continuing with his therapy and gradual improvement. It is great that he got to go to the Flaming lips concert on New Years Eve. I don't think that I have ever heard any of their music either, but I am pretty out of touch. He is lucky to have such good friends. I hope that Tristan will have some good buddies like that as he gets older.
Tristan has had slow and gradual improvement and is definately doing many things that he could not do before the treatments. Last checked, his CPK levels were right around 1000. They were about 32,000 at his initial diagnosis. Like Ryan, he has remained very healthy. He has avoided all of the colds and flu that have been going around...thank goodness!
Thanks for the information regarding Dr. Riordan and Dr. Palmieire. Please keep me updated on his visit to Wichita. That should be exciting.
We will continue to keep your family in our prayers too.
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!!!
Just touching base with you to keep you posted on news from Costa Rica. How did you visit to the DR go?
I heard back from Dr. Riordan this weekend. He's been quite busy since Ryan's story came out. He mentioned his conversation with Pat Furlong and that she was going to have her researchers contact him. He's still has not hear from them. Additionally, he spoke with the lead researcher with the MDA and he is following up with her.
Finally, he metioned that they recently treated a 7 year old DMD boy from Venezuela. He has a dramatic drop in CPK levels and has improved clinically. This is a big indicator that the adult stem cells have the potential for young boys to lead a much normal life.
Lisa, thanks again for you comments and keep the faith. There is real hope in this treatment. Just so you know, one of the other DMD patients that was mentioned as undergoing the treatments, is a friend of ours. He is two years younger than Ryan, but further regressed. He is gaining weight and is feeling much better since his first treatment in July.
We will post a reply on Pat's blog soon. Very similar to what I have told you. Perhaps we can talk about this on the phone.