Our Plan to Stop ACD

After consulting widely with many of our nation’s leading experts in the fields relevant to ACD research, we have developed an initial plan of attack.

Our goals are:

• Provide support for competitively bid and peer reviewed scientific research on the causes and potential modes for the prevention and the treatment of ACD.
• Propel awareness of ACD among relevant physicians and allied health professionals, at-risk parents and the public at-large.
• Promote ACD as a public health priority within the appropriate agencies of the federal government (including the National Institutes of Health and the Centers for Disease Control and Prevention).

Our first research and advocacy agenda:

• Try to find the responsible gene(s) and seek to develop a prenatal test to forewarn parents.
• Develop an animal model of the disease as a platform for testing various regenerative medical approaches — including, potentially, the use of stem cells and medical compounds such as VEGF — for the treatment of ACD.
• Urge the CDCP to create an ACD registry, a crucial clearinghouse to which doctors can report ACD cases, so the true numbers, distribution and phenotype of the disease can be mapped.
• Urge the CDCP to develop and distribute awareness materials on ACD to our nation’s neonatologists and intensive care pediatricians, to assist in the proper diagnosis of ACD, and in turn, properly inform the registry.

Urge the National Heart, Lung, Blood Institute and/or the Office of Rare Diseases of the NIH to convene a scientific conference on ACD. There are brilliant researchers, willing and able to work on this ghastly disease, and an NIH conference would absolutely jumpstart work by facilitating scientific exchange and collaboration.