This Spotlight post was written by Lisa Schill of The RASopathies Network
In those first few moments of his life, I knew something was wrong. I only had a moment to touch him before he was whisked away to the NICU. After a year and a half, we finally had a diagnosis. A RASopathy called Noonan Syndrome. No treatment. No cure.
I am a mother. My main goal in life is to make sure my children are healthy and happy. But what if you can’t keep them healthy? What if you don’t have the band-aids to fix their boo-boos? You dedicate your life to finding them.
21st Century Cures was written by the people, for the people. It is legislation that will help reform the process of drug development by delivering treatments and cures to more families, safely and efficiently. An innovative bipartisan bill that was created after a year of discussions with patients, caregivers, researchers, physicians, and industry - ALL the stakeholders. Everyone in America had the opportunity to share their thoughts, feelings and concerns regarding how to ensure more treatments and cures could make it to the people who need them the most. One of the finest examples of our democratic process at work. It passed the Energy and Commerce Committee unanimously and passed the House by an overwhelming majority.
What does the bill include? It includes more funding for the NIH and FDA, which is desperately needed. It encourages that the patient perspective is at the core of all aspects of the drug development process. The cherry on top – the OPEN ACT. The OPEN ACT was included in the House version of the bill, but separated in the Senate version. The OPEN ACT has the potential to double the number of treatments for rare disease patients.
Just as our forefathers fought for democracy on the Freedom Trail, we are fighting for the health of every American. Everyone will eventually be a patient one day.
When your time comes, are you going to want more and better band-aids in the medicine cabinet?
Senate, we are calling on you to answer the needs of your constituents. The time is NOW for #CuresNOW. Every day, week, or month we wait to pass 21st Century Cures and the OPEN ACT are precious moments lost. Moments celebrating babies first steps, another candle in a cake, or a kiss confirming vows. Moments that should not be taken for granted.
Senate, please help us pass 21st Century Cures and the OPEN ACT today. The longer we wait, the more lives we lose. This legislation is an opportunity to create meaningful change for people that we all know and love. Make it a point to make a difference in their lives and many others with a yes vote when the Cures and OPEN bills come to the floor in September. We need your support. #CuresNOW