HISTORY OF NMF'S ORAL TESTIMONIES AND APPROPRIATION REPORT LANGUAGE
The Department of Health and Human Services of the government oversees funding for research and healthcare. By working with House and Senate congressional members and many other advocacy agencies, the NMF can help shape important legislation that will have a positive impact on the Marfan community. We specifically encourage report language for appropriations bills (bills that state the amount of government funds that need to be used for a specific cause) and written testimony for the Marfan syndrome to help bring awareness to legislators and to secure funding for research by the National Institutes of Health (NIH) primarily by National Institute for Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the National Heart, Lung and Blood Institute (NHLBI).
The National Marfan Foundation has had the opportunity over the years to appear before the House and Senate Appropriations committees and provide spoken testimony on behalf of the Coalition of Heritable Disorders of Connective Tissue (CHDCT) to express the importance and need for research in this area.
HISTORY OF CHDCT AND THE NATIONAL MARFAN FOUNDATION SPOKEN TESTIMONIES
1994 House CHDCT/NMF Scott Kiefer
1995 House CHDCT/NMF Priscilla Ciccariello
1997 House CHDCT/NMF Judith Reed Ligosky
1997 House CHDCT/NMF Ruth Norton, David Goodman
1998 Senate CHDCT/NMF Karen Murray
1998 House CHDCT/NMF Karen Murray
1999 House CHDCT/NMF Hal Dietz, MD
2000 House CHDCT/NMF Rabbi Marc Gellman
2006 House NMF Jessica Falco
HISTORY OF REPORT LANGUAGE IN THE APPROPRIATIONS BILL OF THE SUBCOMMITTEE OF LABOR,HEALTH AND HUMAN SERVICES
The NMF has an accomplished track record in obtaining Appropriations Bill Report Language in the House and Senate Appropriations Bills for Labor, Health and Human Services.
1994 Senate CHDCT/NMF NIAMS
1995 House CHDCT/NMF NIAMS
2000 House CHDCT/NMF NIAMS
2001 House CHDCT/NMF NIAMS
2002 House NMF NIAMS
2003 Senate NMF NIAMS, NHLBI
2004 House NMF NIAMS, NHLBI
2004 Senate NMF NIAMS, NHLBI
2005 House NMF NIAMS, NHLBI
2005 Senate NMF NIAMS, NHLBI
2006 House NMF NIAMS, NHLBI
2006 Senate NMF NIAMS, NHLBI
2007 House NMF NIAMS, NHLBI
2007 Senate NMF NIAMS, NHLBI
2008 House NMF NIAMS, NHLBI, CDC
2008 Senate NMF NIAMS, NHLBI, CDC
2009 House NMF NIAMS, NHLBI, CDC
2009 Senate NMF NIAMS, NHLBI, CDC
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