FederalFunding of Medical Research: how you can help
Federal funding of rare disease research is a major factor that will influence whether or not PA is cured within our children's lifetimes. Everyone agrees we need more research scientists to study the numerous unknown aspects of the pathophysiology of PA, but these scientists must be funded and rewarded for their efforts or else their expertise will go elsewhere. The amount of money needed to conduct ongoing basic research or set up clinical trials is far and above what most small private foundations and non-profit organizations are able to secure by grassroots fundraising alone. For this reason it is important to begin working towards initiating a real change in the level of funding by the National Institutes of Health (NIH) for rare disease researchers.
PARnet supports efforts by Research!America, NORD, and Genetic Alliance to work with our Senators and Congressmen to increase funding for medical research. Together with many other organizations we hope to obtain a level of funding from the NIH that will make a real difference in the number of grants awarded to scientists and physicians wanting to tackle some of the critical questions about PA. Only by increasing our understanding of the pathophysiology of PA will we be able to generate new treatments and eventually a cure for this disorder.
You can help with this effort by contacting your local Senators and Congressmen and express your desire to see them support legislation to increase funding of rare disease research.
Tell them about your children.
Tell them about how your family life has changed by caring for a special needs child 24/7.
Tell them about your health insurance issues, the therapies your child requires, the special diets and formulas they need to survive, the surgeries, the hassles with school systems that don't understand how difficult it is to integrate and teach a child that can become very ill and require hospitalization from common childhood illnesses.
Tell them you want a cure for PA....now, and the only way this will happen is to provide more funding for our researchers.
Support the efforts of organizations like Research!America, NORD, EURORDIS and Genetic Alliance that are working to improve the lives of all of our kids.