Representative Tom Cole

Dear Research Advocate, President Trump addressed a joint session of Congress on Tuesday evening. With his heartfelt recognition of Megan Crowley and Rare Disease Day, and his vision that "[achieving] cures to illnesses that have always plagued us are not too much to hope," the President demonstrated his commitment to faster medical progress. In 2013, we honored Megan’s father, John Crowley, with the Gordon and Llura Gund Leadership Award for his outstanding efforts to accelerate new treatments for Pompe disease, which afflicts Megan. Speaking for all the parents and all the patients who are waiting, we say it’s not too much to hope that we will see the President’s priority for finding...
Dear Research Advocate: Three outstanding speakers addressed Research!America’s annual meeting of members yesterday. Newly confirmed FDA Commissioner Dr. Robert Califf kicked off the meeting, outlining his priorities for the agency. Having known Dr. Califf for some time, I wasn’t at all surprised to hear how determined he is to ensuring FDA engages the patient perspective as it works to improve policies and processes. For example, he underscored how important it is to calibrate risk/benefit calculations to take into account the seriousness of an illness and the availability of treatment options...in other words, how important it is to think like a patient, not for a patient. Bravo! Senator...

Sidebar Quote

The capabilities are enormous, a little bit of research can pay off quite a bit in the long run.
Paul D’ Addario, retinitis pigmentosa patient