The NIH has improved reporting of funding for specific disorders and this information is readily available on their website: http://report.nih.gov/rcdc/categories/
Furthermore, clicking the highlighted dollar amounts for years 2009 and earlier for each disorder provides information on programs and research funded.
When my sons were diagnosed over twelve years ago the levels were shamefully low for DMD (It wasn't even broken out as a separate disorder from muscular dystrophy.). Through the direct actions of PPMD and many family advocate along with support from the MDA the MDA CARE Act was passed resulting in new funding and the establishment of Centers of Excellence for muscular dystrophy research.
As a community we can be proud of our accomplishments, yet we cannot become complacent thinking increases or even continued funded of existing programs will happen automatically. It is up to us. While some work can be done from home in no way is that as effective as direct contact with our Members of Congress and their Washington, DC staff. Without learning our family stories, meeting families and sharing our lives with these people we are just another person asking for funding.
If you are able to join us February 21-22 for the Advocacy Conference, register on the link from PPMD's main web page: www.parentprojectmd.org
Thank you for supporting our sons and community.