Hello All,

If you haven't considered attending PPMD's Advocacy Conference February 21-23 you should.  As many families as possible are needed to support our legislative agenda.  This is how many of PPMD's outreach efforts (Including the MD CARE Act) are funded.  Congress needs to hear from our families regularly.  While many families would rather stay home and write e-mails, the fact remains we are far better off with personal contact and need to build relationships with our Members of Congress.  A staffer sitting at his or her desk is less motivated to encourage their boss to support something that comes by e-mail.  They are more compelled when the request comes from someone sitting in the room next to them.

Go to http:www.parentprojectmd.org to learn more.

Thank you for any help you can provide.

Brian Denger

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See you all there:) It will be nice to get to meet others on the site as well.
Brian I was at the PPMD site the other day looking for this information and couldn't find it. Just looked again and still can't. Can you post a link to the specific page? Thanks.
Karen
Hi Karen,

If you look on the right hand side there is a rotating message box that lists current PPMD events. When the Advocacy Conference appears (there is a picture of the Capitol Building), click that picture to take you to the page.

Brian
Brian, I am so sorry to have just heard about this! Please take just a moment to view my page. I need help in Illinois with research to help me advocate for Children afflicted with MD. Doc stubent getting data get published. I understand your busy........Donna Gluck

Brian Denger said:
Hi Karen,

If you look on the right hand side there is a rotating message box that lists current PPMD events. When the Advocacy Conference appears (there is a picture of the Capitol Building), click that picture to take you to the page.

Brian
Hi Donna,

I live in Maine, so I don't think I would be of help.

Brian
Brian,

It was good to meet you and your sons at the Advocacy Conference. For all of the rest of you attendees, when writing your thank you notes to the people you met, you might want to mention that Rep. Jay Inslee from the 1st Congressional of Washington has agreed to take the lead on the FDA letter. Finally, one of the staffers for California Congressman Issa asked me the extent to which the programmatic funding increase in the Heritable Disorders program being run by HRSA would be collated in a database. He is apparently afraid that teabagger types are going to treat such requests in the same way that earmarks are treated and wants to use that as an excuse to not sign the other two letters. Any thoughts?
Hello Paul,

It was great finally meeting you. John Keast told me he expected to have the names of those who will lead the House and Senate letters in a few days. Once he know he will have Ryan send out an "Action Alert" to all advocates.

As far as your database/tracking question from Rep. Issa, that might be best answered by John Keast. The HRSA program is Authorized for up to $20million and are currently budgeted for the $10M and we are asking to increase another $2M. How that plays out in this climate is a guess.

Brian Denger
Brian, Thanks for your response. I amgetting closer to completion! Best regards, Donna

Brian Denger said:
Hi Donna,

I live in Maine, so I don't think I would be of help.

Brian
Hi Everyone,

I wanted to go this year, but couldn't make it - how was it?
Hi Steve,

The Advocacy Conference went well with almost 100 Advocates representing PPMD for DMD. There is still much that can be done to help from home. Please consider calling your Members' Washington, DC offices asking to speak with their person who works on health related issues. Tell them you would like their boss (Senator or Representative) to support or efforts, primarily the sign on letter to support a Clinical Outreach Program through the Health Services and Resources Administration, HRSA. This is a Programmatic Appropriations request to fund a program designed to decrease the time for diagnosis and better educate physicians and other education and healthcare professionals who see young children about DMD. For more information go to:
https://secure2.convio.net/ppmd/site/Advocacy?pagename=homepage&...

All families are urged to participate and support this important effort.

Thank you in advance for your help.

Brian Denger
Brian and Paul,

Good information as always.

We just need to make phones calls and push now. I believe today is the last day for the House. We have more time with the Senate side. Congress is in recess next week right?

As much effort as we can push for is great!

All the bset everyone!

Julie
Brian Denger said:
Hi Steve,

The Advocacy Conference went well with almost 100 Advocates representing PPMD for DMD. There is still much that can be done to help from home. Please consider calling your Members' Washington, DC offices asking to speak with their person who works on health related issues. Tell them you would like their boss (Senator or Representative) to support or efforts, primarily the sign on letter to support a Clinical Outreach Program through the Health Services and Resources Administration, HRSA. This is a Programmatic Appropriations request to fund a program designed to decrease the time for diagnosis and better educate physicians and other education and healthcare professionals who see young children about DMD. For more information go to:
https://secure2.convio.net/ppmd/site/Advocacy?pagename=homepage&...

All families are urged to participate and support this important effort.

Thank you in advance for your help.

Brian Denger

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