I will be attending the Advocacy conference this year? Who else will be attending the conference?


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Julie, could you advise when and where it is?

It starts Feb 8th and is in Washington DC.

PPMD has posted information about the 2009 Advocacy Conference. To learn more and to register go to:


You may not be able to get a room because the date has passed. You can check with Ryan at PPMD. You can read more about the conference on the Discussion Forum. If you can do this it is a wonderful opportunity and really does help.

If you are not able to make the conference everyone is still needed. We can reach out and touch our Representatives locally too. PPMD will advise step by step what to do. There are enough of us to help along the way and support each other.

Bill, I have attended for a couple of years now and it is the only thing I feel I can control. I will not let my son or any child affected by dmd/bmd go unheard. We need help and we need to educate and raise awareness in congress.

If you are able to make this trip that is great! If you are not able to make the trip don't worry there will be plenty for you to do.

I am curious who your Representative is or what district you are in. I have at one time called every office in California. Yes, I get obsessed about this. I do konw most members in congress want to hear from their people in their district. They may feel for families but they want to hear from those who put them in office and may not help if they don't hear from you so it is important/critical everyone makes the contact.

Please check in with Ryan about how it works and possibly even getting a room mate to share expenses too.

All the best!


Just wanted to offer some tips. Anyone who is going to participate in the Advocacy whether it is attending in DC, local office visit or letter writing and phone calls educate yourself on your member.

I would suggest going to their web page and learning as much about them as possible. This way when you share your personal story, you can also bring up the strong points of the areas they support. If it is education you want to let them know their support will help raise awareness and educate people as well. PPMD has always done a fine job with this.

We can all take an active role in this one way or another. I realize it is difficult for some families to do this for emotional reasons. We all do what we can do. So, those who can speak, please be prepared and know you are not only speaking on behalf of your family but all the families who may be too busy to do this because their tasks on the home front leaves them physically and emotionally drained. That is a piece you can also share with your member.

I want to wish all families the best and please know you are well supported by PPMD, friends and other families if you need any help.

All the best!


I just wanted to check in and see who will be able to attend the DC conference with PPMD this Feb.

I will be attending and my Rep., Doris Matsui is from the 5th district.
Rep. Matsui has always signed on as did her husband whose seat she took when he passed away. Rep. Matsui is very familar with DMD and once sat on the board for FED, Foundation to Eradicate Duchennes, founded by Joel and Dana Woods

Who else will be attending and from what district?
If you are unable to attend, what is your district and will you be able to make contact?

Let's post and see how much respresentation we will have for California. We are stronger in numbers and can and do make a difference. I can tell you that your member wants to hear from you and your contact can get the support we need. So, please if you can not attend in DC be prepared to contact your local office and or DC. PPMD will give you guidance. You are not alone in this.

Perhaps I should post attendance in a new posting....

All the best,



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