It's still 2008, at least for a few weeks, yet it isn't too early be thinking about the PPMD Legislative Conference. This year the Conference is early, February 8-10. Sure, the MD CARE Act was only recently reauthorized, but there are many reasons for families and friends to take time and visit Capitol Hill. Now is the time to begin looking at our schedules and begin making plans to travel to Washington, DC and put a face on DMD.

With many new Members of Congress the message will be very new to them and their staff. We have a golden opportunity to share our stories and experiences to garner support for our cause. We all have a compelling story that can lead a Member to see the value in helping us reach our goals. Constituents are the most effective people who influence Congress.

PPMD has made many inroads in obtaining federal funding, yet this isn't guaranteed. Without a regular presence in Washington other groups will move ahead. There are many worthy causes and we need to be there to raise awareness and let Congress know who we are and what we want for our loved ones. PPMD cannot afford to miss an opportunities to fund research.

The Legislative Agenda has not been set, yet be assured your participation is needed. I urge you to take time and be an Advocate for those who have DMD. We all are looking for ways to make a difference. Participating in the Legislative Conference is an effective way to have an impact on issues that are important to the DMD community.

Sincerely,

Brian Denger

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Reminder: This Saturday, 1/10/2009, is the cutoff for hotel reservations to get the group rate.

I waited too long and missed the cutoff last year and stayed somewhere else because the rate went up so much. $159 / night is a pretty good deal for DC right now. The rooms are $239 a night at this hotel if you book outside the group rate.
Hi Keith.

The deadline for booking rooms has been extended to Monday Janury 12. To all considering I strongly urge you to come and support the community.

Sincerely.

Brian Denger
Hi Everyone,

I will be attending the conference again this year. I will arrive on Saturday afternoon as well. I will be solo this year, without my daughter and son. I agree with Brian we can't not affort to miss any opportunity to assure funding for research.

Thanks
Christine
Myself and another Mom from VA will be attending as well. Since we are local, will not be staying at the hotel, but will drive everyday. This is my first time and look forward to meeting everyone.
Hi!

I am inquiring on behalf of someone to see if anyone needs a room mate for the DC trip.

Let me know,

Julie
marcnjulz@aol.com
All,

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!

Julie

Keith, if we get an office visit in Nancy Pelosi's office I would love to drop off a letter from you. I plan to do at least a drop off letter from my brother in-law. He is in her district.
Julie - sure, sounds good.
All,

Friday, April 3rd is our last day to get House members to sign onto the "Dear Colleague" letter. Go to the link and find out what you can do to get support from congress:

https://secure2.convio.net/ppmd/site/Advocacy?pagename=homepage&...

If you have problems or questions call PPMD to inquire. Research dollars going to NIH will fund much needed clinical trials for this generaltion.

All the best!

Julie

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