We are very hopeful that an orgainzaiton such as MDA or PPMD will sponsor a trial using the same techniques using adult stem cells that Ryan went through. Please let me know if you would like more information about Ryan's treatments and I will pass them along....Curt
He is a "boy" he just has to do it differently for however long he has with us♥ Over the years I have had times I was very active then times no so much...not only is Duchenne Progressive so is our grief as parents. If I need time I take it, when I want to reach out I do. The main thing is yes I have bad days like today, crying and wondering how I can love the you know what even more out of my son. He 18 on the 22nd every second, minute, day, month or year is a blessing, I'll take it!
Oh, I was by myself and did not have Nick with me. I had my dirty green van with the PPMD magnet on the back. Your husband had just unloaded Joseph and was about ready to take him into the building when I was getting in my car.
Just wanted to say thank you for your advice for our MDA appt. Sorry that we were not able to meet up on that day I know Julie was going to be there as well but by the end of the appt Neel was just ready to go home. Maybe we can all get together sometime soon and get to know each other.
It is such a small world. It was really nice to meet your brother. I always wondered after the brief meeting what he thought about PPMD. I am not a speaker and just really want to do well for PPMD and help educate others and gain support. PPMD is truly a remakable organization. There are other good foundations but PPMD is the leader for dmd that is the largest grass roots organization that represents our families.
I will try to call you soon. I know you have a birthday party this weekend. Please tell Joseph happy birthday from me. He is a beautiful child.
This week has been hectic and the weekend looks like it wiil be as well. I will call because I would like to share information and get know you better.
It was really great to meet you and Joseph. Yes, we will have to talk soon and get together real soon as well. Sorry about Nick in the background. He is always anxious to go home after his night course and does not like for me to talk on the phone and drive.
Let me know if your brother is the same person I met about 2 years ago in Auburn during PG&E's Campaign for the Community. I am doing what I can to get support from PG&E for PPMD. I am not a speaker but I do go out and talk during our campaign to get money for PPMD. This year I was put in for the Meilke award for my PPMD volunteer work. If you volunteer 40 hours or more per year you can be put up for nomination. I did not get first place, which is $5,000 to the charity. However, I did get $1,000. There is always another year.
You want to make sure you have all options available and Shriners does give you more options. Nick goes once a year. He has an appointment in November.
I am still learning as I go and I have a lot to learn. We have Blue Shield, UC Davis as primary and Kaiser as secondary (mine). Nick sees Dr. Wong in Cincinatti as well.
I am looking forward to talking in person.
I will add you cell phone to my phone shortly. I appreciate having it. I did not have your e-mail or cell phone number before now so I thank you. I am learning as I go as well and want to share whatever information I can.