I respectfully submit this letter on behalf of the CARES Foundation in support of the Specter-Harkin Amendment - to provide an additional $7 billion over the President's budget request in the Labor, Health and Human Services, and Education Appropriations (LHHS) bill to make up for cuts made to NIH and other research, health and education programs in the President's request.
CARES Foundation, Inc. is a 501(c)3 non-profit membership and advocacy organization dedicated to improving the lives of those affected by Congenital Adrenal Hyperplasia (CAH) through pro-actively advancing research for a cure, educating the public and healthcare providers about all forms of CAH, advocating for universal newborn screening, and providing support services and resources vital to the CAH community. We represent over 2,000 individuals and families affected by CAH and 500 healthcare and public health professionals in all 50 states.
CAH is a family of congenital disorders affecting the adrenal gland. In its severest form CAH can result in life-threatening imbalances in salt and hormone levels leading to adrenal crisis, and if not diagnosed quickly, death. The effects of milder forms of CAH include severe acne, hair loss, excessive facial hair in women, short stature, anxiety and depression, and infertility in both males and females. CAH affects males and females in equal numbers; however, its frequency varies by ethnicity. For example, it affects 1 in 27 Ashkenazi Jews, 1 in 40 Hispanics, 1 in 53 Croatians, and 1 in 300 Italians.
As an orphan disease CAH does not receive much attention in the private research sector. If funding is cut from the NIH and other programs, what little research is being done may be discontinued leaving the CAH community to fund any and all research for better treatment and a cure.
Medical research as funded under the LHHS bill is vital to the future of the CAH community. Your vote for the Specter-Harkin Amendment is vital to all current and future CAH-affected families across the nation.
