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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I attended the conference in February 2008 for the first time. My son was diagnosed in May of 2007, so the diagnosis was still new to us. I certainly never imagined myself lobbying Congress prior to this.

If you haven't participated in an activity like this before, I urge you to do so. For myself, I consider this an opportunity to fight back against this disease. The front line of the war against DMD is in research. The research doesn't happen without dollars. The federal government is a major funder of medical research. Thus, the need to interact with our elected officials. It's time well spent.

Don't be intimidated by the thought of going to Congress. You will be trained, and you will have support from professionals and experienced parent advocates. Don't think your voice isn't important. It is - constituents matter.

Last year was important. We got the MD-CARE act reauthorized. I think this year is even more important. January 20 is the end of an error, sorry, era. I'm personally very hopeful that we'll see an end to flat NIH budgets with the shift in power in Washington. This is an opportunity. We need to seize it.

Count me in for this year. I'm looking forward to it. Hope to see many of you there...
Keith said it well. Faced with this diagnosis, it's easy to feel helpless and useless. Going to Capitol Hill and squeezing your representatives may make you feel better. It certainly did for me.
Hi Brian:

You can count on two of us from our family to be there. We aren't sure yet which two. I may be the designated babysitter this year so my daughter can attend with her husband Dan or it might be us two again but either way PA will be represented.

AND I agree with the first two posts. My son-in-law and I were like two deer in the headlights for our first meeting but we had help from the lobbying team and after that we were good to go and it did feel very powerful to be doing something to help our boys and their families.

TRUST ME if we can do it anyone can. AND it's so important to put faces to names for our representatives. Phone calls are great for follow up but there's no comparison to meeting with someone in person!

And getting to meet with everyone and the comaraderie that is felt is an added bonus:)
We are local here and can come down (at least one of us while the other is baby sitting). So, what do we need to do? Never done anything like this before. Thanks.

-bain
There is no better testimony than from those who have participated! When people ask how I deal with my sons having DMD I explain that being involved in Advocacy gives me back some control over a disorder that takes up so much of our lives.

So, what do parents need to do? First, mark off the time on the calendar and begin to make travel plans. More information about where to stay will be forthcoming. Our Washington Group, Cornerstone, will provide training and all the information needed to successfully meet with Member of Congress and/or their staff. Regardless of who you meet with your message is important and can shape their support for funding for DMD research programs. Families should think about stories that represent how DMD affects their life and make copies of photos of their boys and family to leave in the Members' offices

Please watch the PPMD website for information concerning the Conference. This typically is posted in early January.

Brian Denger
PPMD has just posted information about the 2009 Advocacy Conference. To learn more and to register go to:
http://www.parentprojectmd.org/site/PageServer?pagename=ending_atte...

Brian Denger
All,

Yes, I have to say going to DC is the one way in which you feel you have control regarding dmd. Each and every year is important for those who can attend to attend. This year is urgent because of the shift in power. The words of DMD must be heard in congress in order to give us what we need in research, establishing standards of care, DME and educating people. If we do not have a presence then others will come forward with their needs and DMD will be lost in silence and congress will forget and not know what our needs are and how important they are to us and everyone living with dmd. So, if you are able to attend please do. You presence represents not only your family but the families who can not attend because the cost of living with DMD is too high emotionally and financially. So, you are helping those who can not attend as well. Our voices for our children need to be heard.

I know all of us helped to get the MD Care act re-authorized which really without everyone’s support would not have happened especially in times like these. So, the re-authorization act is just an example of the power our voices have in congress.

Some of the things you can do to prepare are to make sure you have good walking shoes. That is one of the best advices Brian Denger offered me my first year. States like California going to DC please bring warm clothes, coats so you are warm. We sometimes forget how some parts of our beautiful country can be colder than where we live at times. You can gather pictures and write your stories so you have leave behind letters to remind the office you visit of dmd and put a face to this horrible condition. Start to think about your letters you want to write and leave room for the specific information PPMD will provide later. I would advise everyone attending DC or not to write letters to tell your story. If you are not able to attend your office can still receive your letter. Lets educate them on DMD another year! Wait to hear from PPMD for details on the letter and how to get your letter to DC. Just have your part of your personal story prepared to tell and ready to use.

You will gain the needed support in DC to make this trip. So, if you can afford it financially and emotionally please go to DC. If you can not afford it for whatever reason you still play an important role. Stay tuned for more updates from PPMD. They will give you the tools and resources you need. We as a community are strong.

Does anyone know how we did with funding for the “Dear Colleague” letter we presented this past year?

All the best!

Julie
Just a reminder that we really need your help in Washington this year. With many new faces on Capitol Hill the time is right for us to develop relationships with those who can help us move our federal research agenda forward.

Please go to the main PPMD page or http://www.parentprojectmd.org/site/PageServer?pagename=ending_atte... sign up today!

Brian Denger
Keith said:
I attended the conference in February 2008 for the first time. My son was diagnosed in May of 2007, so the diagnosis was still new to us. I certainly never imagined myself lobbying Congress prior to this.

If you haven't participated in an activity like this before, I urge you to do so. For myself, I consider this an opportunity to fight back against this disease. The front line of the war against DMD is in research. The research doesn't happen without dollars. The federal government is a major funder of medical research. Thus, the need to interact with our elected officials. It's time well spent.

Don't be intimidated by the thought of going to Congress. You will be trained, and you will have support from professionals and experienced parent advocates. Don't think your voice isn't important. It is - constituents matter.

Last year was important. We got the MD-CARE act reauthorized. I think this year is even more important. January 20 is the end of an error, sorry, era. I'm personally very hopeful that we'll see an end to flat NIH budgets with the shift in power in Washington. This is an opportunity. We need to seize it.

Count me in for this year. I'm looking forward to it. Hope to see many of you there...
I am getting ready to purchase my tickets. I recall last year that there was an orientation session on the Sunday evening. Does any one know whether that's the plan this year, and if so, what's the start time. I can get a decent flight that arrives at Dulles a little before 4pm on Sunday, but that only works if the orientation starts after 5pm.
Paul,

Go to the link Brian provided. The details are there. There is an orientation from 3pm to 7pm. That is great you are going. Will you be traveling with family again this year?

Happy New Year!
Thanks, Julie. Happy New Year to you, too. This time it'll be just me. Looks like I'll be a little late to the orientation. Unless I arrive on Saturday, I can't get there earlier.

Julie Garcia said:
Paul,

Go to the link Brian provided. The details are there. There is an orientation from 3pm to 7pm. That is great you are going. Will you be traveling with family again this year?

Happy New Year!

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