Federal Funding for EB Research

Hi everyone!

Just a quick note ..........

Patrice forwarded an email to me regarding a possible $15 Million EB research funding opportunity!  It literally only takes a few minutes of your time. 

1. Go here: http://www.congress.org/congressorg/directory/congdir.tt

2. Find your representative and send them the following info:

On behalf of all people living with Epidermolysis Bullosa (EB), every military burn casualty, and the thousands of veterans suffering from diabetic ulcers, we respectfully request that you provide funding of $15 million for EB research within the Congressionally Directed Medical Research Programs (CDMRP) in the fiscal year (FY) 2011 Department of Defense (DoD) Appropriations Act.

A $15 million appropriation to fund EB research within the CDMRP in the FY 2011 DoD Appropriations Act would move us closer to finding a cure for this heartbreakingly painful and often life-threatening condition. It would give hope to the military and civilian families struggling to find effective treatments for their EB-afflicted children; help provide relief to the millions of Americans suffering from diabetes-induced ulcers; and contribute to advanced care for U.S. combat veterans recovering from thermal or chemical burns. Thank you for your consideration of this request.

The way that I did it on the website ... once you enter your info into the site's form, it'll keep it for the following reps and all you have to do is copy and paste the above text into each 'comment' field.

Here is the actual email sent by DebRA:

Dear Debra Friend/Family:

Debra urges you to act now! A Member of Congress has asked us to pass on this very important message to you. We only have three days to act and cannot delay. On behalf of all people living with EB please call, email, or fax your local Senators and Representatives asking them to sign on to the EB appropriations requesting $15 million in funding for EB Research.

For contact information for your local Senators and Representative(s), please visit: http://www.congress.org/congressorg/directory/congdir.tt

You can also email or fax the following message to your Senators and Representatives:

On behalf of all people living with Epidermolysis Bullosa (EB), every military burn casualty, and the thousands of veterans suffering from diabetic ulcers, we respectfully request that you provide funding of $15 million for EB research within the Congressionally Directed Medical Research Programs (CDMRP) in the fiscal year (FY) 2011 Department of Defense (DoD) Appropriations Act.

A $15 million appropriation to fund EB research within the CDMRP in the FY 2011 DoD Appropriations Act would move us closer to finding a cure for this heartbreakingly painful and often life-threatening condition. It would give hope to the military and civilian families struggling to find effective treatments for their EB-afflicted children; help provide relief to the millions of Americans suffering from diabetes-induced ulcers; and contribute to advanced care for U.S. combat veterans recovering from thermal or chemical burns. Thank you for your consideration of this request.

Please forward this message to your friends, neighbors and family. Your support can make a huge difference!

Thank you for your support,

Dystrophic Epidermolysis Bullosa Research Association of America

Also ....... did everyone see the video of Elly on her blog today?!?!

Cutest thing ever

I could watch it all day ..... then again I guess I have a soft spot for gorgeous little baby girls.

 

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