U.S. Congressional Representative Doris O. Matsui
is introducing the Bone Marrow Failure Disease Research and Treatment Act
this week. The proposed legislation will establish an Acquired Bone Marrow Failure Disease Registry at the Centers for Disease Control (CDC), direct research into environmental causes of these diseases, coordinate outreach and educational initiatives targeted to minority populations, and improve diagnostic practices and patient care for bone marrow failure diseases.
This legislation represents a new comprehensive approach to combating bone marrow failure diseases.
To build support and seek cosponsors, Representative Matsui has sent a letter
about the bill (PDF, 4.0MB) to every member of the U.S. House of Representatives.
Everyone can and should take action to encourage their own Congressional Representatives to support the legislation. There are two specific ways to help:
1. Over 125 attendees at this week's AA&MDSIF Patient Conference are going to Capitol Hill to ask their members of Congress to support the initiative.
2. Send email in support of the Bone Marrow Failure Disease Research and Treatment Act to your U.S. Representative and urge them to sign on as a co-sponsor.
To send email to your Representative, go to the Grassroots Action Center
page and click the Take Action
button. Personalize the sample message to tell your story and why you ask for support of the Bone Marrow Failure Disease Research and Treatment Act.
One person can make a difference, and hundreds of people speaking the same message can have a particularly powerful impact on Congress. This is a unique opportunity to let your voice be heard about legislation that can help bone marrow failure disease patients, past, present, and future. We encourage you to send email to Congress now, and to encourage others who are affected by bone marrow failure diseases, including those who care about you, to do the same.