Hi Ryan, I met you briefly at the connect conference this weekend and Patrick Rownd said to get in touch with you and you could walk us through the advocacy piece and how to get started. We are in St. Louis, MO. 63109 and I know senator Blunt has already signed on, but Claire Mccaskill has not. Not sure where we are in Missouri as far the house. Any help would be very appreciated as we are just getting started.
hey ryan how are you its kimmy just letting you know all ready email senator cantwell from washingtion state , will be calling congressmen heck klimer and smith. about med care out is there any one from tacoma comming or gig harbor kimmy
Hey Ryan, Do you guys happen to have any guide lines or a packet for Physical Therapy? I have been running into a lot of issues with them doing activities that are not helpful to Danny, but "they are the professonal" so I thought if I had something I could just give them that would help! Let me know, also please let me know if and what you need me to do for district 5 (53214) WI.
My son Austin(DMD) goes to a private school. Every year we have a 5K Run to raise money for the school and a portion of the money they send to Parent Project. Could you send me some information that maybe can be passed out at the race about what duchenne is and what Parent Project is all about?
It was great meeting you at the Run for Our Sons Dinner at Naples/Disneyland. Thank you for welcoming us.
Please could you send me the Manifesting Carrier DVD and materials that you have available. I will gladly give you my new address once you add me as a friend to keep it personal if that is okay. We have moved since I last received materials which was probably 2008 sometime. Also, let me know how PPMD can have more presence on the West Coast.
Looking forward to catching up with you at the conference this week. I started a discussion last week to see if anyone who is attending might see it and contact me or Diana about the study. It didn't attract any attention, but I don't know if there's a more direct way to invite conference participants. I believe you all may be including info about the study in the welcome packets for participants, and Diana should have sent you a podium announcement (or will give it to you in ATL). If you have any other suggestions, please let me know. Thanks a lot.
Hope you are well. I have a question about COQ10. Its a suppliment. Are you aware of this suppliment and do you know of any potential benifits to our boys? I have just become aware of COQ10 and would like to find out more. Maybe if you know of another family using this product you could pass along the info to them.
Hey just checking to see if you were able to send Josh stuff for his presentation at school. Have not recieved anything yet, just checking in on it. Sooo nice to hear your voice when we talked. So much to fill you in on too.
Talk to you soon
Absolutely,anytime- we'd love to see you,how is everything going?give us a call anytime/bring your skates-i think we are the only house in West Islip w/ a ice rink in the back yard.Spencer loves sliding around on his sneakers.How's the ppmd gang? tell them we say hi and that we hope to crawl out of our shell and participate in some"reindeer games",it seems we've been sort of stuck on the "island of misfit toys" etc..... for a tad too long. hope to see you soon,stay warm
My name is Gisel and am trying to get as much information out as I can about DMD. Not enough people know about it. I admit that I was one of those people until I became affected by it, and it shouldn't be that way. I have contacted a local radio station Dj in Miami and he said he could help with the cause. I was told by another member that I could ask you for information and a DVD.
Ryan, I was reviewing the site and came across your photo and information. It was great to put a face with the name. You have assisted me several times over the past year since Garin's diagnosis in September of 2007. I appreciate the work that you do and the efforts of the PPMD organization.
We wanted to thank you for the phone conversation the other day. It really helped to talk to you and to receive the information that you sent our way. It will greatly help with explaining some of the issues we are facing to other people.
Hope you and your family had a wonderful weekend? Do you have any questions for me regarding your son with DMD?Since I have been down that road,I'm the perfect person to ask,so feel free to ask me anything.