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Oppose McCain Amendment to Eliminate Funding for Research
The Aplastic Anemia & MDS International Foundation has received word that Senator John McCain (R-AZ) may be offering an amendment, as early as next week, to eliminate all fiscal year 2011 funding for (more)


Help Get Cosponsors for Bone Marrow Failure Legislation
On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640)... (more)

Wisconsin:
Johnson, Ron - (R - WI) Class III
2 RUSSELL COURTYARD WASHINGTON DC 20510
(202) 224-5323
Web Form: ronjohnson.senate.gov/public/index.cfm/contact

Kohl, Herb - (D - WI) Class I
330 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-5653
Web Form: kohl.senate.gov/contact.cfm

On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640). This legislation would bring together the resources of several federal agencies to advance our understanding of, and treatments for aplastic anemia, myelodysplastic syndromes (MDS), and ParoPNH. We need your support now!

Suggested letter:
I am writing to ask you to cosponsor the "Bone Marrow Failure Disease Research and Treatment Act" (H.R. 640), introduced by Representative Doris Matsui (D-CA) on February 10, 2011. We need your support. As a constituent coping with bone marrow failure disease, I ask that you support this new comprehensive approach to combating these devastating diseases.

Every year approximately 20,000 to 30,000 Americans are diagnosed with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and other acquired bone marrow failure diseases.

The Bone Marrow Failure Disease Research and Treatment Act would leverage the expertise and resources of several agencies within the Department of Health and Human Services (HHS), as well as patient advocacy organizations, in a new comprehensive approach to combat bone marrow failure diseases. H.R. 640 increases the Federal Government's commitment to researching and treating aplastic anemia, MDS, PNH, and other acquired bone marrow failure diseases. The legislation directs the Department of Health and Human Services (HHS) to combat these diseases through a comprehensive strategy that includes creation of a national bone marrow failure disease registry so that researchers can combine their data in one place, yielding more effective research designs and better results and pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors cause people to acquire bone marrow failure diseases.

Other highlights include minority-focused programs to make information on treatment options and clinical trials available to minority communities, particularly Hispanic and Asian American communities and Agency for Healthcare Research and Quality grants to help improve diagnostic practices and quality of care for patients with bone marrow failure diseases.

Last year, the U.S. House of Representatives approved a similar but modified version of the bill.

Congresswoman Matsui will be sending you a Dear Colleague letter in the coming weeks. Please consider becoming a cosponsor of this important legislation and contact Joel Bailey, Senior Legislative Assistant, in the office of Representative Matsui at joel.bailey@mail.house.gov or at (202) 225-7163.

Thank you for your attention to this important matter.