Did not know you were on facebook. Good to connect! I will be dropping Nick off at 7:45 am on Friday and then I should be able to scoot over to Shriners. I think we will recognize each other from our pictures...I hope. My cell is 916 317-9280
I just left the message below on Ruth's web page and wanted to make sure you had this same message. Please see below
I just wanted to get the word to you and Joel that I believe I made contact with your House member's Merced office to request a sign on for the PPMD letter we are circulating with the House members. My Rep, Doris Matsui is co-sponsoring the letter and can be contacted by your member to sign on. If your member is Dennis Cardoza please call tomorrow and let Stacie in the Merced office know you wish to have his support on this important letter. Stacie can be reached at 209 383 4455. I sent an e-mail to a friend at work who forwarded my e-mail to Stacie. The more calls the better and most likely he will sign. We only have until this Friday, 4/17 for final signatures.
I will let Joel know and I will forward my e-mail to the @tds.net e-mail.
Hi - Thanks for adding. Yes, Antioch is not that far from here. I have many friends and former coworkers from there. Your son is adorable. Alex is still doing pretty well. We got our diagnosis 4 years ago. Take care.
Just a thought but when you get a chance look up your House members name and call the local office. Let them know you really want their support for the MD Care re-authorization bill, H.R. 5265. You can ask to know where there Town meetings are so you can talk in person.
Just a thought. A phone call always brings it to their immediate attention.
Let me know when you will be coming to Shriners and if you would like to get together.
Me again, I really needed to leave a note about advocacy. It is important because it is a critical part for us to get our children the help they need.
When you get a chance look at the advocacy section under Discussion forum. We need help to get Senators and House members to support the MD Care re-authorization act. It is the one way we can help our children and have our voices heard. Both CA Senators have signed on. See if your House member supports it. If they do not, we can help you to try to secure their support. Just let us know.
Welcome to the new PPMD site. I am sorry you are here because your child has dmd. This is a very good community to be connected to for information and support.
My son is 16 years old with dmd.
Just a quick tip. You can apply for a medical baseline with your utility company. You request the application, they send it to you, your child's doctor signs it and you mail it in. When it is processed you are then given a medical baseline. Every little bit does help in saving money.